tag:blogger.com,1999:blog-30979924809236160892024-03-19T04:03:56.960-06:00The Unique Life of Mr.BFollow us on our journey through medical procedures, hospitalizations, surgeries and L-O-V-E for our UNIQUE boy! Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.comBlogger226125tag:blogger.com,1999:blog-3097992480923616089.post-52408475756388697572014-07-13T22:55:00.002-06:002014-07-13T23:14:19.477-06:00Depression Sits In For A Visit<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia; font-size: large;">June was not a good month. I should correct that, June was not a good month for this <em>Momma</em>, it was a pretty good month for Mr.B.<br />
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<span style="font-family: Georgia; font-size: large;">It's been a long year and by that I don't mean since Jan, I mean since last July that it's been a long year. Last July we had an admission that kicked off a seemingly non-stop stream of admissions that has just wound down as of this June. I didn't go back and count but I think that it was 10 admissions and 4 or 5 Emerge visits (that didn't end in admissions). For a one year period? That's a lot, even for B.</span><br />
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<span style="font-family: Georgia; font-size: large;">So why was June not a good month? Because there is this thing that medical/special needs parents get (at least the majority that I know) that is called the 'waiting game'. When you have multiple admissions (or even a nice long one) then you have a major transition back into your home 'life', then you have a grace period of 'happiness and normalcy' (whatever that looks like for your life)...and then the <em>irrational </em>(yes I'm aware of the irrational) fear of 'waiting for the other shoe to drop' begins.</span><br />
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<span style="font-family: Georgia; font-size: large;">When you have so many admissions your hormones (cortisol especially) are at a constant high and you (and by you I mean me) live in a state of fight or flight. Now, in all honesty, I've not left this state since B was born (or the terrifying 10 days before he was born rather). How do I know that I'm in this state? Multiple reasons but the main one is that even when B <u>does</u> sleep for a few hours consecutively (on the extremely rare occasion), I do not. I will wake after an appropriate amount of time and have a brief moment of irrational fear that if he's not woken me up. <em>There must be a problem! Has he stopped breathing? I need to check! </em>Of course he's alright, of course he's breathing (thank goodness) and <em>of course the only problem is now that <u>I'm</u> awake</em>! The other main problem that I have is that I can only sustain this 'living' for so long before something has to give. Inevitably I get sick but I've started taking care of myself SO well since January that I've not only <u>not</u> gotten sick in over 6 mths but I'm getting stronger, losing weight and building muscle! (Hurrah!) So what's left to give? My mental health took a beating instead. </span><br />
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<span style="font-family: Georgia; font-size: large;">My Mom was here in May which is a huge influx of support and my In-laws followed her less than a week. We had lots of extra help, support and love in the house for almost 5 weeks straight (which is amazing) but it did have to come to an end. Combine family leaving, mixed with overwhelming physical and emotional exhaustion, and a Momma in fight or flight and you get depression. Now I don't say this lightly and I don't say this to worry anyone (I truly am fine) but I do know the harsh road of depression and I do know myself (when I'm willing to admit it).</span></span><br />
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<span style="font-family: Georgia; font-size: large;">I'm not at all ashamed to admit that I've had issues with depression in my past (my longest 'episode' was over two years in my late 20's). I've done medication, therapy and have gotten to know myself damn well (not all of it necessarily positive). What I do know is that as a medical parent and a special needs parent that I'm going to be more prone then ever to this brain imbalance. There are many factors that can trigger a new round of this lovely D-word for me but it's usually a combo of things. </span></span><br />
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<span style="font-family: Georgia; font-size: large;"><em><span style="font-family: Georgia; font-size: large;"><strong>I sit quietly and I wait for the dragon to come and either pull me down further (and realize that meds will once again be needed) or I sit on the dragon while she soars and is in control until finally she flies me back up above those awful clouds once more.</strong> (A wee look inside my head if you will)</span></em>
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<span style="font-family: Georgia; font-size: large;">B was (and still is) stable, the rest of the boys (hubby included) were (are) healthy and the weather was changing for the summer months. So why? Why now/then? Why not my body says, why not.</span><br />
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<span style="font-family: Georgia; font-size: large;">We got some 'new' news about B in June as well that just hit me hard. It's not life threatening but it pushed me to a breaking point (past that exhaustion that I don't like to admit). B's having issues with his phosphate being through the roof (we're trying to see if it is additional kidney issues and/or is he now leaching calcium from his bones to compensate) AND he's been diagnosed with bilateral <a href="http://en.wikipedia.org/wiki/Coxa_valga" target="_blank">Coxa Valga</a> (hip angle). Neither of these are nearly as 'huge' as other discoveries but some days it's just <u>hard</u>. It's hard not knowing the future, it's hard not knowing what else is 'hiding' underneath that heart-melting smile and sometimes it's just simply hard being a Mom of a medical kiddo.</span><br />
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<span style="font-family: Georgia; font-size: large;">We had to go into Peter Lougheed Hospital for a quick in-patient last week to get a urine and blood draw back-to-back for the phosphate levels. Here I was thinking this would be a somewhat quick-ish trip...or not. It was simply very weird to have to go anywhere other than ACH for something but we had no desire to sit in ACH Emerge (and get bug exposure) for hours on end since the urine had to be a catheter. Three catheters and three blooming pokes later for blood and we were done (and Momma was ready to lose her sh*t). I try and try and TRY to lessen his medical 'traumas' but life just simply doesn't work that way for poor B.</span></span><br />
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<span style="font-family: Georgia; font-size: large;">June was also a rough month due to the fact that after a meeting with my oldest's Principal we came to the realization that our current (and much loved) school wasn't enough for us. My oldest needs more support in the classroom and the school we were at just simply can't offer it. It was an awful decision I had to make and it was not at ALL what I had intended with the meeting with the Principal! The decision to switch schools for Torin is one thing (obviously a no-brainer, the kid needs help!) but I agonized about 'making' Rylan switch schools. The guilt I have around Rylan having to make so many sacrifices in life already being a Neuro typical kid between his brothers is huge enough without adding this. My heart hurts for Rylan when I know that I have to make a decision that isn't in his best interest as well. Yes, for those of you that are saying you have to do what is best for the family as a whole, it's true but here is a child that is so very empathetic and caring and sweet that just wants to do everyday 7 yr old things and can't most days. This is a child that has already made countless sacrifices for his brothers and there will be many, many more. He's having to leave behind some friends that he's been in school with since he was 3, so it's hard. Yes, kids adapt. I do know all of this but please understand it doesn't lessen the guilt.</span><br />
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<span style="font-family: Georgia; font-size: large;">The hardest part about leaving the school also is for me. I'm leaving my safety net of my Mom-friends behind. These women know me, they know our story and they are there for me. I have 5 or so on speed dial when life goes sideways (like being stuck in Emerge with B with no way to leave or get Mike) to care for my children in a pinch. I know I'll make new friends but I struggle on how to describe our lives with those that already know us! (<em>Apparently I'm somewhat full of excuses tonight</em>!)</span><br />
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<span style="font-family: Georgia; font-size: large;">Speaking of losing friends, I'm also dealing with the heartbreak of having two of my most wonderful Calgary friends move away. (There will be a future post) My friend Rachel (and her hubby Nathan) have done more for us in the past two years that I've known them then I could even begin to count. As well as our family member and Torin's long-time Aide Kelsey has moved onto green pastures. (No wonder why I'm feeling sorry for myself!) Thank goodness for the internet and Skype!</span></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Our lovely Miss Kelsey</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">It's blurry only because we were laughing too hard! My darling friend Rachel</td></tr>
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<span style="font-family: Georgia; font-size: large;">All of my inherent woes aside...How is <u>B</u> you ask? B? Who's B? Bah ha, yes, I think I'm funny (even when no one else does). Mr.B is doing really well at being 2! </span></span><br />
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<span style="font-family: Georgia; font-size: large;"><span style="font-family: Georgia; font-size: large;">He is getting into pretty much anything and everything (it's a good thing he's <u>not</u> oral!) and he's getting really great at tantruming (which often makes us laugh, or pull out our hair, or both depending on the day). He is still getting stronger, working harder and pulling to a stand sometimes independently. On the exciting front we did get him fitted for and chose a <a href="http://www.r82.com/products/walking/crocodile/c-23/c-72/p-165/?sku=48265" target="_blank">'walker'</a> for him which will come to us sometime in the fall.</span><br />
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<span style="font-family: Georgia; font-size: large;">We are headed to ACH this week to have B fitted for his first set of AFOs (<a href="http://en.wikipedia.org/wiki/Orthotics" target="_blank">ankle/foot orthosis</a>) as well.</span> <span style="font-family: Georgia; font-size: large;">This should be an 'interesting' experience to say the least! We will try to go in with positive thoughts and hope for the best but it's hard to see B at all pumped about having his feet cast for the moulds.</span><br />
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<span style="font-family: Georgia; font-size: large;">It could very well be that part of the reason that June was also a pretty rough month was due to the fact that B's sleep took a strong downwards turn again. He is back to having his 20 min sleeps (wakes every 20mins the entire night screaming) several times a week (we had it down to only once or twice while the other nights he could go for 2-3 hrs). It is very rough on this Momma, even with help during the day. It is very hard to be positive and a good parent when all you can do is try to function some days. We are still seeing the Sleep Psychologist and the Sleep Dr over at ACH and trying to find a solution (ANY solution) but so far we are coming up with nothing. We even trialed B on a sleeping pill (given via g-tube) and it did the <u>opposite</u> affect! Instead of a nice deep sleep I had a 2 yr old doing spins in his crib for two hours! Ack. The mysteries of the B.</span><br />
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<span style="font-family: Georgia; font-size: large;">However! Summer is finally here and we are spending as much time outside as we can (when it's not too hot). Nothing in this world makes B happier than being out in nature, nothing. When he's in his chair he has a very distinct need to be in motion (and gets very annoyed when stopped) and waves his hands and feet around whilst singing away! I try to get him out for a minimum of a 1/2 hr walk each and everyday as it's a stress release for <u>both</u> of us!</span><br />
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<span style="font-family: Georgia; font-size: large;">The beginning of July has been a busy few weeks with swimming lessons each day for the big boys in our local outdoor pool and getting to all of the appointments for B. We have had some time to do some fun things however. We were able to take in some fun and sights at the <a href="http://www.childrenshospital.ab.ca/site/TR/MotorcycleRide/General?fr_id=1240&pg=entry" target="_blank">ECL Choppers Ride for Charity</a> at the Rotary Flames House (Paliative and Respite care centre for B). We met some lovely people, who oddly enough were enamoured with our B, and got some great shots of the kids on and around some bikes. That same day we walked across the street to ACH to find the Stampeders in residence for their annual visit (although they do so much more than that) before their opening game. The big boys had a blast hangin' with the big dudes again this year. We also took the time (and were able thankfully) to take in the annual pre-Stampede parade at ACH. Every year the <a href="http://cs.calgarystampede.com/" target="_blank">Calgary Stampede</a> puts on a mini-parade at the hospital for our medical kiddos and inpatients. It is a fantastic event for families that want a taste of the Stampede without all of the craziness that goes with the actual Stampede Parade.</span></span><br />
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<tr><td class="tr-caption" style="text-align: center;">On our new friend John's bike (<a href="http://www.fitzflooring.com/" target="_blank">Fitz Flooring</a>)</td></tr>
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<span style="font-family: Georgia; font-size: large;">The big kids and I decided to take in Stampede this year in the evening for the first time last night. We left B and Daddy at home and headed downtown at 7pm. We didn't actually even enter the park until after 8:30 with having to park the van and get into the park (I live only a 15min drive from downtown) but the kids were excited and they were troupers. We spent far too much money (which is why it is only a once a year event) and they ate far too much crap (the only day of the year they are allowed to) and had a great time, just the three of us. Our two counter parts were missed but without them we were able to stay and see the nightly fireworks and leave the park just shy of midnight. My big boys felt so grown up staying up so late for the first time in their lives! :) Life is all about making memories to see us through the hard times.</span><br />
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<span style="font-family: Georgia; font-size: large;">There doesn't seem to be much in the way of a lazy summer for us ahead but we are making the most of it. The plan is to hit BC and the West Coast at some point (depending on B) so you'll pretty much know when I do.</span><br />
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<span style="font-family: Georgia; font-size: x-large;"><em><strong>From Our Home to Yours...</strong></em></span></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com2tag:blogger.com,1999:blog-3097992480923616089.post-57283613518249994962014-05-30T16:45:00.000-06:002014-05-30T16:45:23.091-06:00Life Just Gets Away<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNZMy62F056yXrWy2daBOcHhFLj_JBD0c1kba8-cPLe7-NCx3KiHgXtOBDiQIp-5mhU0u8fMq6Uwfr4t5xkJXGdstVDiPSRiiZwkDh5Qp0Ewjp1lbKALwNk8T2SohqS-zY9Gcagk_4jL8/s1600/SAM_3665.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNZMy62F056yXrWy2daBOcHhFLj_JBD0c1kba8-cPLe7-NCx3KiHgXtOBDiQIp-5mhU0u8fMq6Uwfr4t5xkJXGdstVDiPSRiiZwkDh5Qp0Ewjp1lbKALwNk8T2SohqS-zY9Gcagk_4jL8/s1600/SAM_3665.JPG" height="374" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Loves</td></tr>
</tbody></table>
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">It just happens, life gets away from me (like ALL the time). I know that I've not blogged in a good while when I'm having trouble sleeping (the few hours that B lets me) at night.</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">There is always news and there is always something to share but what there isn't? Time. Time is a jewel in a house with two extraordinary kids, these three boys of mine. This whole 'taking care of Momma' year is also meaning that time is getting used, ready for it? Gasp! Sleeping (sometimes)! I'm also taking the time to go for walks with B in his skookum (I don't think I've ever needed to know how to spell that word!) new chair and enjoying life as we know it.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXoP34JKSTXtrWdkAAk20XJrNHIQo0Pebd_H4rE3mjgkSEssu40Y_YYkVsJ3cdbYKiuHzwh73o58T6NZlqP48jWP3HP_p4JPADcYSLwKxoRv2mitAM5kP6yeWZCFg9koKBlKjC9jSNo_8/s1600/SAM_3709.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXoP34JKSTXtrWdkAAk20XJrNHIQo0Pebd_H4rE3mjgkSEssu40Y_YYkVsJ3cdbYKiuHzwh73o58T6NZlqP48jWP3HP_p4JPADcYSLwKxoRv2mitAM5kP6yeWZCFg9koKBlKjC9jSNo_8/s1600/SAM_3709.JPG" height="400" width="237" /></a><span style="font-family: Georgia; font-size: large;">Life is crazy busy (as are most lives) and it's not any less stressful when B is at home (not in hospital) but it is just a different stress. We saw the Nephrologist the other week (more on this later) and it was a new Dr that was unfamiliar with Mr.B. He asked me if I found the beginning hard, like the first two years and was it getting easier? Easier? No, nope, nil, nada. Different? Yes. I am certainly <u>less</u> (at least a little) concerned that he won't be breathing when I check on him but I'm no less concerned about the uncertainty of our future. A future that no one can predict or even hypothesize about. Am I more confident as B's primary Nurse/Dr/Momma? I sure am, even changed out his g-tube to a new one the other day (Oh yeah baby!!) and THAT makes it easier. Knowledge, that makes it easier. So I guess that yes, (is it too late to change my answer?) life is somewhat 'easier' but it's a pretty relative 'easier'.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMNooPBBLYrQSWrzQe6RK6d4PeyE5-3Q7ZGPqbFniwsISeOkJkqat-BUmtUrTntx1fS0HydTcx-QRzrRX6cD2ICBUsRZ7Cfyoqd-IkxSET47kWwfvLn9XKRnfkYGIfKLHEPIwrDM9P6aM/s1600/SAM_3711.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMNooPBBLYrQSWrzQe6RK6d4PeyE5-3Q7ZGPqbFniwsISeOkJkqat-BUmtUrTntx1fS0HydTcx-QRzrRX6cD2ICBUsRZ7Cfyoqd-IkxSET47kWwfvLn9XKRnfkYGIfKLHEPIwrDM9P6aM/s1600/SAM_3711.JPG" height="400" width="226" /></a><span style="font-family: Georgia; font-size: large;">On the flip side? There are lots of things that also are getting harder. A 2 1/2 yr old that wants to communicate (more on that later too! Did you want me to stop so you can get a snack??) and gets frustrated easily. The world notices even more now that my son is 'different' (or funny-looking as one child so astutely put it to his horrified Mother). We can't hide from the stares (if we are behind you and you are walking forwards and can still see us? You're staring!). Now don't get me wrong, I know B is certainly the cutest 2 yr old in the world but there are just days when I want the stares to go away for awhile. There are 'good' days when they truly don't bug me and I find it funny (not so much ha ha) but then there are days when I just want to call people out on it. Don't whisper behind your hand, just ask me dammit! </span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Of course that then begs the question of 'what the heck do I tell people if/when they DO ask??' (assuming they have no medical background). My go-to is generally he's a medically complex kiddo...ohhhhhhh says the stranger (like, oh, I have no idea what that means) and/or we get ohhhhhh (oh how I pity that poor Mom, her life must be so hard). So some days I feel like I can't win and maybe I'm just not supposed to. Education is hard, it's exhausting but if it's not me then who? I guess I better be careful what I ask for! Stares or the anticipated questions, which shall it be?</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">On the great note (of the stares) we finally got B's NEW CHAIR! Hurray, yippie, zipideedodahday! (ok, I'll calm down a bit) Mr.B's new wheelchair is the bomb! It is a 'city select' stroller base with a wheelchair seat attached to it. I had a Mom literally stop me in the parking garage at the hospital and ask me questions about it and take a picture! I had a good laugh. It's exciting, this technology of ours. There are not many of these chairs in town yet (only ours and our buddy Sawyer's) because they are not at all government funded. Michael thankfully has a great extended provider who paid for the whole chair (and trust me, it wasn't cheap). Life is better for B being up higher and being able to see life around him while being fully supported. Have you ever stopped to look at how many curbs and such in your community are not wheelchair friendly?? I didn't until now and there are not many that are! I find it frustrating and I'm pushing him, I can't imagine for someone pushing themselves! (a down-the-road project I think!)</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Peek-a-boo!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwi2WRPAvMmo5KJckt7FjuZbgG7WKVOi1BN5k2QpReZfL0fqIqrKEbZl_oIOHBDMYMhr8loNuQ3aK4dE2qZiI4AkzuLxJp9mmJeUyd-vcL9_fMs4KvAMf18PQOC8JMWvN-fAYekxSCKcU/s1600/SAM_3449.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwi2WRPAvMmo5KJckt7FjuZbgG7WKVOi1BN5k2QpReZfL0fqIqrKEbZl_oIOHBDMYMhr8loNuQ3aK4dE2qZiI4AkzuLxJp9mmJeUyd-vcL9_fMs4KvAMf18PQOC8JMWvN-fAYekxSCKcU/s1600/SAM_3449.JPG" height="291" width="320" /></a><span style="font-family: Georgia; font-size: large;">The big boys love to push B in his chair too and feel so proud when they get a chance to push him around. Torin is tireless in pleasing B and one day after school he pushed B in his chair around the whole school field while the other 9 yr olds played. The only downside to B's being out and about more is that he wants it more and more. As soon as we stop walking (heaven forbid Mom should want to talk to someone else) I get immediate "Walk, More" signs (and screams but hey, we just ignore those!).</span><br />
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<span style="font-family: Georgia; font-size: large;">About those 'signs'...B's sign language has taken off in the past few weeks (could have something to do with him being on full feeds again for an extended period, just sayin'). Mr.B is confidently signing and using (correctly) at least 10 or so signs and even some sequentially (like walk, more). It's so exciting to see him communicate and know that in his eyes I see the wheels turning constantly! He is grabbing onto more and more around him and wanting to get some of it out! We saw our SLP (speech) today and I asked her for suggestions (as we haven't really grown in the verbal sense for months). She thought I should pull back on the signs and maybe concentrate more on the speech. Um, no. I <u>know</u> speech is important but to me communication is waaaay more important than any 'words' he can learn right now. Some of you may not agree with me on this, and that's fine, but what I do know is that sign language was the first language for my other two kids and they turned out to be pretty damn fine! If B's going to 'talk' he'll do it on his own time (not that I'm not working on it every hour of the day with him, I am) but I'm not cutting back on any of the signs in favour of the spoken word. For anyone who's had a 2 yr old you know how much easier life is once they can communicate, even a little, of what they want! Sometimes I just want/need a 'good on you Momma!', you know? We are looking into the possibility of seeing an SLP over at the Hearing Clinic instead since they'd be a lot more in tune to our needs I think.</span><br />
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<span style="font-family: Georgia; font-size: large;">Speaking of therapy, I'm trying to decide what on earth to do for B in the fall. It is so hard because I want him to be 'socialized' but on the flip side I need him to stay away from as many bugs as possible...no I'm not calling your kids germy, they are ALL germy! We've not been out of hospital/Emerge and not sick for more then two blooming months in the past year. The. Past. Year. I was looking into PUF (Program Unit Funding) for the fall <u>but</u> because kids are only funded for a max of three years (until the age of six) and the thought of putting him in any kind of playschool programing freaks me out, I decided against it. It doesn't mean that we won't keep up with swimming and doing therapy but we'll be doing it through a home based program instead with Specialized Services (through FSCD hopefully) in the afternoons. Once B is stronger and able to fend off some of those said germys then we'll look at a more definitive program. He is responding so well to the therapy tools that we use at home and is starting to do more and more each day!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Who loves to sort and organize? <br />
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<tr><td class="tr-caption" style="text-align: center;">Miracle Month at Costco! <br />
Thanks to Lana for making this amazing board of her daughter and some of her ACH friends!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Watching himself on the ACH video displayed</td></tr>
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<span style="font-family: Georgia; font-size: large;">We've had a busy month worth of appointments and follow-ups for May. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Echocardiogram</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">We started the month off seeing our favourite Cardiologist, Dr.Fruitman for B's follow-up Echo/EKG etc. It's nice now only needing to go every 6 mths for these tests but it's still stressful nonetheless because I never know if B's going to 'surprise' us with something. We do know that he does still have an open PDA (leaky valve) and that it will most likely need a surgical closure in the future (but when in the future is the question). I was feeling anxious going into the appointment because I was fearing the thought of another heart surgery. It won't be a complex procedure (especially compared to many other heart babies we know) but they most likely will have to go in through the side of his chest again and do the repair up in Edmonton (due to his previous heart surgery and complexities). Dr.Fruitman (as she's done for the past 2 1/2 yrs for me) put my mind at ease. I love this woman! It's not hard to trust this woman as she's the Cardiologist that was with me every day in hospital for those brutal 10 days until B was delivered and she has been with us through all of B's heart issues since. Dr.Fruitman said that B's Corarctation (aorta repair at 22 days old) is looking good and still functioning well (it is a high risk of needing a second procedure as he grows) and that she is very happy that his SVT (rapid heart rate) is under control (for now). As for the PDA it is still open (when babies are small they can tend to close up on their own with time which was the hope for B's) but that she's not overly concerned with it right now. She said that studies are showing now that open PDA's aren't being automatically closed anymore and that we've got time (and lots more medical gobbly goop!). I was happy to hear that she wanted to give him another 6mths before reviewing it again! Yay no heart surgery this summer! B was a trouper through both the Echo and EKG (neither of which he's fond of) and he was even helping the Ultrasound tech move the wand over his heart, smart boy!</span><div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">NO FUN at Cardiology!!</td></tr>
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<span style="font-family: Georgia; font-size: large;">The next day we went into our follow-up clinic with Pulmonary (lungs). Since B's been having respiratory illnesses (seemingly back to back) since January we decided to change over his inhaled steroid to see if that would help. (I guess since we've been to Emerge since then for a lung infection it's not made too much of a difference). We did get to hang out with Dr.Anselmo that day which is always fun. I like when we see Dr.Mark because he is the one that was treating B when he was teeny tiny and concerned that a tracheostomy was going to be our only option to get this kiddo to breathe on his own. Dr.Mark is amazed and astounded at B and how far that this child has come. It is always refreshing to see Dr's stunned by this child and all that he can accomplish. I think that B challenging the Dr's keeps them on their toes and makes them better Dr's because of it. If Mr.B can beat some odds then chances are others can too!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Our Lovely Miss S who's been donating with us since the beginning!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Blood Donor Superstars!!!</td></tr>
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<span style="font-family: Georgia; font-size: large;">We had another successful Blood Drive that weekend, although lower than normal numbers for us, every time we do it we have given the ability to change lives. Michael was sick for this one unfortunately and this Momma's iron was too low (habitually) but our SuperStar donors still persevered! It's a small thing to do, donate blood but it's shows a huge commitment to us, to B and to changing the world when people come out to support us and donate themselves (when able). I love nothing more then knowing that I have children that think donating blood is 'normal' and will be fantastic and regular donors themselves one day! The staff at CBS are always happy to see B and all of the progress he's made over the past two years we've been donating.</span><br />
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<span style="font-family: Georgia; font-size: large;">It was a month of changes for us as well as we said Adios to Justine as she went off on an adventure of a lifetime and a grand Hullo to my Mom who came to stay in her absence. Life is always so much easier with my Mother in my house as my house seemingly cleans itself. I go to bed each night with a clean kitchen (I cook, she cleans...it's beautiful) and kids with drawers full of clean, sorted laundry (no grabbing wrinkly pants out of the laundry bin when Grandma's on board!). Throughout my Mom's stay she also managed to whip my yard into (a much better) shape and help me plan my 'garden' that is hopefully happening next week (with the arrival of the In-laws! Yay!). What I love the most is when my Mom takes on momentous tasks at my house (like pulling out the fridge to wash the wall behind it! Who does that??) and she grumbles that she'll not be doing this when she's 90 ya know! I don't believe her though, not one bit. It was sad to see her go after a month of having her here but I think that she'll be enjoying the peace and quiet of her apartment for just a little while now! <em>(What I would like to know though is HOW was my Mom here for a full month and I don't have a SINGLE picture of her during this visit?!)</em></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Reading with Ashley</td></tr>
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<span style="font-family: Georgia; font-size: large;">Next in line was Nephrology (I did mention a snack was warranted?). We had a brand new Neph Dr since B's regular Dr only works one day a week (which is when B seemingly gets sick). He was a nice guy but it's draining to have anyone new on B's team. I have to start at the beginning and work my way through B's 'significant' history which is very long and very convoluted. I do however love having fresh ears hear the story and tell me their point of view on it all. The good news from Neph is that the kidneys and all of their lovely cysts are seemingly stable right now. The Dr did however note that B's potassium is low and his calcium is high on his latest blood work (from Thrombosis follow-up). He was hypothesizing as to why but we didn't leave with any answers. The other concerning thing that he told me is that B's got almost no Ferritin right now (can you say pale kid??). Again, we don't know why his ferritin is low (it's 4, should be 30) but again, we left without an answer. The Neph Dr was happy to leave us with follow-up with B's Pediatrician in regards to his blood levels.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Storytime, no need for a narrator apparently!</td></tr>
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<span style="font-family: Georgia; font-size: large;">The big news of the month (well one of them anyhow) is that I spent an entire day in Edmonton and both B and I survived! I had a Critical Care SCN meeting to attend and it was an all day meeting in Edmonton. I wanted to go, I felt I should go but I was really quite anxious about it all. I knew B would be okay but knowing that I'd be that far away didn't make it easy. I was (mostly) reassured as our ol' pal Ashley (from this time last year) was free for the weeks while Justine was away to come and help out here. So between Ashley and my Mom I knew B would be well cared for and loved, it was just the medical side. Michael assured me (more than once) that he'd be in town and that he'd be able to be home in under a 1/2 hour if he was needed and that we DO have 911 in this city if all else failed (not that they'd know what to do with a child like B I'm afraid!). I made my Mom and Ashley swear that if they did have to go to Emerge that they were to call me immediately and I would be able to talk to the medical staff as needed (I'm not tooo much of a control freak am I??). I DID it, I got on that blooming plane and I flew up for my meeting and we all survived (hurrah!). I have to give thanks to my friend Pete, who I went with as he kept my mind preoccupied for me. Something wonderful did happen that day though as well (other than a great meeting). We found ourselves done our meeting early (by 2 full hours) and we weren't due to fly home until 6pm. Peter and I checked into the airport and went through security and simply on a whim (at Peter's fabulous suggestion) asked the Air Canada Employee if there was any room on her 4pm flight that was loading. She did check and let us know that it was but it would be a $75 change fee for each of us. We were both comfortable paying it if it meant going home early and I was talking excitedly about getting home to surprise the boys (who were not impressed with their Mother jet-setting off for the day). The employee then realized that she couldn't seem to make it happen and so we just conceded that it was what it was. The next thing I knew she was handing both of us boarding passes and telling us to hurry up so we didn't miss the plane (the 4 o'clock flight)! Wow! She told me to hurry up and go see my kids! What a kind soul! There was no charge to either of us and we gladly boarded the plan for home, reassured that there is in fact great kindness in this world!</span><br />
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<span style="font-family: Georgia; font-size: large;">All three boys (myself included) thoroughly enjoyed the (4 day long) May long weekend and we're all getting ready for summer to arrive I think. B loves nothing more then having his brothers at home for his beck and call and for his grand amusement!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Who us?!</td></tr>
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<span style="font-family: Georgia; font-size: large;">We even managed to find some time to sneak B in for another haircut (his third) which thankfully wasn't as nearly as traumatic as the previous two! He was still seriously not happy with the whole thing but hey, it's a step in the right direction. </span><br />
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<span style="font-family: Georgia; font-size: large;">Summer is rapidly approaching and we have high hopes to travel West again this summer. Torin has it all mapped out for me as to where we <em>should</em> be going so I'm trying to make most of his dreams happen. We will have to avoid crossing over the boarder into the US again this summer though as B's health is just still to precarious and unpredictable (and I don't know if I could get insurance to cover him). Torin is disappointed as that is a big part of the trip that he loves (Auntie Terri and Uncle John and their rotten children <u>are</u> a blast, I can contest to that!). I am hoping that Mr.B will love the trip as much as he did or even more than last years trip! We are really hoping to get to see the family/friends that haven't yet met him but I also know that I need to be realistic and the trip will all go according to B's needs and schedule. So if you get a last minute phone call from me don't be surprised! :)</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Chillin' in Emerge BEFORE the drugs hit...</td></tr>
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<span style="font-family: Georgia; font-size: large;">We did have to make a wonderful (not) trip into Emerge (again) on Friday due to B catching (yet another blooming) respiratory infection. I tried to stay away, I tried!! Have you ever wondered why nothing ever happens in Heathcare on a Monday? Who gets sick on a Monday?? No one, I swear! For B it is almost always seemingly on a Friday (usually when people aren't working). We did have the wonderful Andrea (Homecare Nurse) come by and see us on Friday afternoon with the hopes of her telling me that what I was hearing in his lungs was just in my head. No such luck. She suggested that with his work of breathing, combined with the fact that the 5 puffs of ventolin every hour weren't doing anything to help, that we needed to go in. Damn. Off we went to Emerge but I was at least hopeful that they'd give me a round of Dex (steroids) and send us home for me to treat him there. </span><br />
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<span style="font-family: Georgia; font-size: large;">We did get taken back right away (which is <u>really</u> nice but never good). B was none too impressed with me for the visit that's for sure. Long story short (as it's a 7 hr story if I go through it all) B's lungs look no worse then they did when he was so very ill in March. The not so good part of that is that they don't look any better either. He's got so much 'damage' from the RSV, Adeno and Rhino viruses that the lungs haven't even (noticeably) begun to heal. So the question is whether or not this is still a lingering 'flare up' of the illnesses or if it was in fact a new infection is up for debate (especially since we were in Emerge for this exact reason a month ago). We did however get our three days of Dex and got sent on our way.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz6fdGM0UAuXKQd0BiOK7jVUj02swYOG7yiFgAsem4GafB9E61N8ubTIp_Q4wTQhEHEEYHUdF0zfCFcP3X_Z6Zpgs0A44C2uvTKtFGrAnMGWAlULmkwq0zAzWyNHgP1QqCtFyyRxHykLQ/s1600/SAM_3911.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz6fdGM0UAuXKQd0BiOK7jVUj02swYOG7yiFgAsem4GafB9E61N8ubTIp_Q4wTQhEHEEYHUdF0zfCFcP3X_Z6Zpgs0A44C2uvTKtFGrAnMGWAlULmkwq0zAzWyNHgP1QqCtFyyRxHykLQ/s1600/SAM_3911.JPG" height="342" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">SuperStar!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">The next morning (I wish I'd video taped it) B was still as high as a blooming kite on all of the 'asthma' meds they'd given him (27 puffs total in ONE hour). It took him almost until noon that day to 'come down' from it all...ugh. But come down he did and he even felt good enough to attend the big bash for our friend Lincoln's Birthday/Fundraiser for ACH. Can I just say that my friend Laine Kitt (and her hubby Adam Gill) put on the most wonderful event for the party and also managed to raise over $18,000 dollars to go to the ACH Foundation??? How awesome is that?!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">One cool dude!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">With May coming rapidly to a close and June starting up we are spending as much time as possible outside with Braeden. I can't even begin to tell you how much this child loves nature and being in the sunshine. We try to get him out for at least one long walk a day when we're able and to put him on a blanket on the lawn (he hates grass) so that he can explore. I'm bursting with excitement to see him go this summer, we've got big plans! Summer can't come fast enough if you ask me (and some teachers I know!!).</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home To Yours...</em></strong></span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com12tag:blogger.com,1999:blog-3097992480923616089.post-15193861546049542392014-04-27T14:07:00.001-06:002014-04-27T21:38:37.422-06:00Letting Life Guide Us<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRxtcJ4xKhidvZnAuHNfhTYbVKPqioD0LQq7CdTb1NvOecfvZP60WnsSrVcRLI9vdMUGe9ajQxeP0S5hBMIfVLI9Nk_Ja75NR7JYHF8U0fn2ETvABYPDO0ES8pFKluUx5aPbL2If2OSoU/s1600/SAM_2778.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRxtcJ4xKhidvZnAuHNfhTYbVKPqioD0LQq7CdTb1NvOecfvZP60WnsSrVcRLI9vdMUGe9ajQxeP0S5hBMIfVLI9Nk_Ja75NR7JYHF8U0fn2ETvABYPDO0ES8pFKluUx5aPbL2If2OSoU/s1600/SAM_2778.JPG" height="300" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitiKf_gZ6yj4O4kc8-Tu09319FNO3UA1XAEstRoYX2w6V8CQX-hfjOlFQU1S4sxXyKD98hA1cOu-GsuUMu6QAcE0B5WW9EAS5dIb2zpdE9rdyYybwEOpPY6nCX96uaZtaM4DyubIMxgwg/s1600/SAM_2790.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitiKf_gZ6yj4O4kc8-Tu09319FNO3UA1XAEstRoYX2w6V8CQX-hfjOlFQU1S4sxXyKD98hA1cOu-GsuUMu6QAcE0B5WW9EAS5dIb2zpdE9rdyYybwEOpPY6nCX96uaZtaM4DyubIMxgwg/s1600/SAM_2790.JPG" height="300" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRIrIMIGyWbopFh-LSr43RFnrCzKZ1meev-CUJDht3rYlPWpLsCougAUvAB6VVeaSMjQpp_DW2SFt8KHxO9QHTIjLTkEmAONZi-vFJDxd4ynLIfJT1aOv1eidx2eiXUxXGXVDLY5FyFuk/s1600/SAM_2810.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRIrIMIGyWbopFh-LSr43RFnrCzKZ1meev-CUJDht3rYlPWpLsCougAUvAB6VVeaSMjQpp_DW2SFt8KHxO9QHTIjLTkEmAONZi-vFJDxd4ynLIfJT1aOv1eidx2eiXUxXGXVDLY5FyFuk/s1600/SAM_2810.JPG" height="317" width="320" /></a><span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">So funny thing, when I don't write posts at 2am I get more sleep! Go figure! :)<br /><br />We had a lovely Easter but it was spent on the West Coast as we packed up and did a last minute trip out as a family. That kind of thing is a very 'Lia' thing to do but not a very 'Mike' thing so I'm very happy that he was able to make it work. As I've mentioned before my Dad's not been well so I just felt in my heart that I needed to go, sooner rather than later. We will go out again this summer but the thought of waiting another three months was just too much. If I want to be honest as well, I wanted and needed to see my sisters! </span><br />
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<tr><td class="tr-caption" style="text-align: center;">B enjoys the drive!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Stacked up and traveling in style!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">It was quite a feat to get all five of us out all the way to Victoria but we did it. We did the first 12 hr stint to Chilliwack the first day, spent the night at my sister's and then proceeded out to (and onto) Vancouver Island on Friday. We really had less than 48 hrs in Victoria but we crammed in a good visit nonetheless and the boys were <u>thrilled</u> at just being there (although there were a whole lot of tears when they realized how fast two days go by). </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Breathe that ocean air!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I was very happy that the boys got to spend some time with my Dad and that he even got to hold B (for the first time) for a few minutes. We took lots of pictures and had a pretty spectacular Easter Egg Hunt in my sister's back yard on the Sunday. I love watching all of our kids together as well, it warms the heart like no other. My niece (who is 3) is a little enamoured with Mr.B and the two of them were playing like two peas in a pod. Acadia was sure to keep him occupied while he was having to sit for a feed and I got a great little video of the two of them playing 'catch'. I don't think Rafe and Rylan can ever have enough time together though, there is never enough time to cram in all of the Starwars and HeroFactory into one visit!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Bubble mania!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxxfhxCVpmuLym-HThN-gHVfX5V7X7Htz79TxrbTYzfnP0G-e9paUIklhMQHYh5-4YIQ7E3sxYNbIqvVfOLsirCJSL_6ETPtgY55VjOI6ZvMN89wmXi_sVDrNnLLtTFqM0PII3N5w8wBw/s1600/SAM_2953.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxxfhxCVpmuLym-HThN-gHVfX5V7X7Htz79TxrbTYzfnP0G-e9paUIklhMQHYh5-4YIQ7E3sxYNbIqvVfOLsirCJSL_6ETPtgY55VjOI6ZvMN89wmXi_sVDrNnLLtTFqM0PII3N5w8wBw/s1600/SAM_2953.JPG" height="356" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Honk, honk Dada!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">So great to have us all there!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Grandpa Lousier and his three Hicks boys</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Grandpa had just enough energy to hold me for the first time!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Partners in crime!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2axB3vBiQDsusz7xalFS7c1GbJi9dNQMQ8YPDgxRGYTaBlrMCYSh-hp2EdjPtK8xobwXRGxTATw2yGPiaICvTVcUbVVZ0FM4CqyhokqajT3X1wWeoVE6SDMKBeIY_t00d7L23Kg5DIYs/s1600/SAM_3168.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2axB3vBiQDsusz7xalFS7c1GbJi9dNQMQ8YPDgxRGYTaBlrMCYSh-hp2EdjPtK8xobwXRGxTATw2yGPiaICvTVcUbVVZ0FM4CqyhokqajT3X1wWeoVE6SDMKBeIY_t00d7L23Kg5DIYs/s1600/SAM_3168.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The hotel life</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I don't know if this is going to be too small for me this summer Momma!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Easter Bunny found us!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFMv6oPSHHf7Gtdl1KLuZS6oyw8apMYmstfu3t_YF-siCcQOQjMJdy3PwxoFlMk41N2c2VreD5KNxKqzOyHgDq7DJj7gIlQeZ7eMMnnP4PUayARrd0Il7bbdeKA5aUJuaY1-i8xgt068w/s1600/SAM_3176.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFMv6oPSHHf7Gtdl1KLuZS6oyw8apMYmstfu3t_YF-siCcQOQjMJdy3PwxoFlMk41N2c2VreD5KNxKqzOyHgDq7DJj7gIlQeZ7eMMnnP4PUayARrd0Il7bbdeKA5aUJuaY1-i8xgt068w/s1600/SAM_3176.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I LOVE my new car!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0bWFCmFUyz5FEbrdWO0KM1Mizq9nCH6MI_rUMMD0ztwtZFcdGrOhVTkDGYqN9-4H4w00wg93W7NCp-59BMiesx1Zz-cHcgZqzFW8GAVsNGFOXP37eW0fTENTF3VwYM_2U3aKKe0ArYBE/s1600/SAM_3192.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0bWFCmFUyz5FEbrdWO0KM1Mizq9nCH6MI_rUMMD0ztwtZFcdGrOhVTkDGYqN9-4H4w00wg93W7NCp-59BMiesx1Zz-cHcgZqzFW8GAVsNGFOXP37eW0fTENTF3VwYM_2U3aKKe0ArYBE/s1600/SAM_3192.JPG" height="297" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Now where are those eggs??</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8KGUWHw6_PyGiCrR0PBgearYUkOxnnK4kvtN4CbVGkugZkWWQbdRvRudZolU-y3ndPPboDRrJ2-EKFGqeXMYtExf_5edNXEbQTF6TqFzj1RWUz_8tuEYAK212-Z0AofqVCnX3f7veC-A/s1600/SAM_3198.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8KGUWHw6_PyGiCrR0PBgearYUkOxnnK4kvtN4CbVGkugZkWWQbdRvRudZolU-y3ndPPboDRrJ2-EKFGqeXMYtExf_5edNXEbQTF6TqFzj1RWUz_8tuEYAK212-Z0AofqVCnX3f7veC-A/s1600/SAM_3198.JPG" height="260" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There is never enough Dada time</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjruSKMYObW_buwV75yHk3ZPag4aDG_e6CH8YJxhN79GpXP5Xw5QL2DHPk5zYEHdockV9ip28_0TR7J5DUHaHFYgoiWPe_rQ7bn7a0ipgEvEyA2PFGKRKadt9EEz6V-lBoy_e2M9kzOHog/s1600/SAM_3222.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjruSKMYObW_buwV75yHk3ZPag4aDG_e6CH8YJxhN79GpXP5Xw5QL2DHPk5zYEHdockV9ip28_0TR7J5DUHaHFYgoiWPe_rQ7bn7a0ipgEvEyA2PFGKRKadt9EEz6V-lBoy_e2M9kzOHog/s1600/SAM_3222.JPG" height="255" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A good find!!</td></tr>
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<span style="font-family: Georgia; font-size: large;">We headed back to the Mainland on the Sunday afternoon and drove straight into Mission to have Easter dinner with Mike's family. It was only a four hour visit but we crammed a good deal of eating, playing, and fun into those four hours! Our boys don't get much time with their cousins so they ran around and around. It's great having all four boys (our two oldest and our nephews) all within 3 1/2 yrs of each other so that they are all close in age and share many similar interests. Both Jacob and Nate are so very gentle and caring with Braeden as well. They were both so sweet to him and almost as protective of B as his own big brothers!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNQ3XcLEqNbTE4sNpZp8ogcNAAT6dKVE1DDnSFwUyvLeRfeOxh4FWdBmnQzTowgpYgvwEVfg8Q1Vc0mQfTrBjBL1NSqufpAN6jUWrgZICo68zPd9j29umsl70Z9TRk4AeBgi5euKNJyLI/s1600/P1210825.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNQ3XcLEqNbTE4sNpZp8ogcNAAT6dKVE1DDnSFwUyvLeRfeOxh4FWdBmnQzTowgpYgvwEVfg8Q1Vc0mQfTrBjBL1NSqufpAN6jUWrgZICo68zPd9j29umsl70Z9TRk4AeBgi5euKNJyLI/s1600/P1210825.JPG" height="267" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The amazing time of us being all able to go (first trip out as a family in 8 yrs)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Auntie Ang telling me secrets (and letting me make a heck of a mess of her table cloth)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpWEkA0HVobPwtixD6l39Ykc6gfRWthEXSqYxGUeDNjBzS9ahD2b8JlaTy723E0gC3ojYv6STJNwII4NLNVUS1lIQhIOKYb0vaDShPCZlrcoiytqY2wHYODVyQMgKlZnjiPm5oLFRruW0/s1600/SAM_3294.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpWEkA0HVobPwtixD6l39Ykc6gfRWthEXSqYxGUeDNjBzS9ahD2b8JlaTy723E0gC3ojYv6STJNwII4NLNVUS1lIQhIOKYb0vaDShPCZlrcoiytqY2wHYODVyQMgKlZnjiPm5oLFRruW0/s1600/SAM_3294.JPG" height="328" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Uncle Scott</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Hicks boys</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtkO8rzcwlDihWV2Yf8O5retxzYkmEhLuYVGG2csuoCI_AzQYZd_l5gOMu1HcE9_sBHMPiG1YcndapVZ3qzMNOaV5Q_qE5vyPbSEw4VDcG4oNBscpyBHkfIr_dVuREOfmf-l0fTLqYcI8/s1600/SAM_3326.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtkO8rzcwlDihWV2Yf8O5retxzYkmEhLuYVGG2csuoCI_AzQYZd_l5gOMu1HcE9_sBHMPiG1YcndapVZ3qzMNOaV5Q_qE5vyPbSEw4VDcG4oNBscpyBHkfIr_dVuREOfmf-l0fTLqYcI8/s1600/SAM_3326.JPG" height="400" width="345" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">5 Hicks Grandsons!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Making Grandma Jean chase me!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0s0iDWkKuqUuEHDCpqt6qaCFb3vRNEE6SjIn43R3yRf1V9a5GT3CYV347yW5qIEOvb7IJmHFxVxJWgdeavlHvx8x5zCmLasdYS2u6Tj6617f8Z28W7rHOzAkNo2FAK5X5QGRi2CXa8kU/s1600/SAM_3352.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0s0iDWkKuqUuEHDCpqt6qaCFb3vRNEE6SjIn43R3yRf1V9a5GT3CYV347yW5qIEOvb7IJmHFxVxJWgdeavlHvx8x5zCmLasdYS2u6Tj6617f8Z28W7rHOzAkNo2FAK5X5QGRi2CXa8kU/s1600/SAM_3352.JPG" height="352" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loving the feeling of the trampoline!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVJ9PABxDjOxBu0x_x4RKuf8Xxf_0qY6y-fjvselAYdekG3wHv2BMcMumKGBrRCQIPALC1lAN72QrTHLYwfZjmSuc08VEXwL5W1IQLBg10szDjyx-tjxaJFLSO2HpaVXSRgyaaC5Kp9gg/s1600/SAM_3354.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVJ9PABxDjOxBu0x_x4RKuf8Xxf_0qY6y-fjvselAYdekG3wHv2BMcMumKGBrRCQIPALC1lAN72QrTHLYwfZjmSuc08VEXwL5W1IQLBg10szDjyx-tjxaJFLSO2HpaVXSRgyaaC5Kp9gg/s1600/SAM_3354.JPG" height="400" width="306" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma Sam helping me get my jump on! (Auntie Ang's Mom)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCsUUDjEN2mnZyoDAsS5XTF4jlTfA8zYB5Orr48jXDSutvhY8yE_ZIARrq3zXyzIFFs9roOdDLUZodbxi08w3jEkQVFrGFxFPCYt-43Zs838dqP_hqzqxltnTFiK_-lVv8c8Zowz5__PQ/s1600/SAM_3378.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCsUUDjEN2mnZyoDAsS5XTF4jlTfA8zYB5Orr48jXDSutvhY8yE_ZIARrq3zXyzIFFs9roOdDLUZodbxi08w3jEkQVFrGFxFPCYt-43Zs838dqP_hqzqxltnTFiK_-lVv8c8Zowz5__PQ/s1600/SAM_3378.JPG" height="291" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Three generations of Hicks!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">We spent that last night in Chilliwack and drove home on Monday morning, putting in another 12 hrs to get home. What a trip! So much stress! Was it worth it though? Hell yes and would I do it again? Well maybe not this month but in another month sure...well maybe not for only five days (three of those travel).</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidQCJzLEIFOOG_bMa7YmFp-V7AJ2E5UBJzdII3ge6x8wqzNA7xr6yQRsNOefV-58gU1eazA7UhNHv6JRD7oZYlM9P6EseCrogPoVrJHbXEPzRISPLOEFhf7aqtXSL7113WbwtwK9PJ69U/s1600/SAM_3382-001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidQCJzLEIFOOG_bMa7YmFp-V7AJ2E5UBJzdII3ge6x8wqzNA7xr6yQRsNOefV-58gU1eazA7UhNHv6JRD7oZYlM9P6EseCrogPoVrJHbXEPzRISPLOEFhf7aqtXSL7113WbwtwK9PJ69U/s1600/SAM_3382-001.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Homeward bound!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">On the ride home B started to get sick and I ended up doing some pretty acrobatic moves in the middle of Roger's Pass in order to vent his g-tube (not many options to pull over in the mountains). He just stopped being able to tolerate his feed any longer so I stopped trying to force it. By the time we got home to Calgary that night he was already starting to cough...sigh. It was a long night and the next morning I got our ACH bags packed for the 'just in case'. It was also no wonder when both of his big brother became sick in the following few days either (and Daddy too).</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">His HomeCare Nurse and RT came by Monday and both agreed that he was 'on the fence' about needing to go in. It hadn't even been a full 24 hrs at this point of the illness so I held off. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">On Tues I knew I had to take him in. His work of breathing had increased as did his cough. I was hoping (fingers crossed) that the Emerge Dr would be okay with giving us a round of Dex (oral/g-tube steroids) and would send us home again. That's pretty much what happened thankfully! I did push for an xray though (which is ironic for the number of times I've fought against <u>not</u> getting yet another blooming xray!). If I was going to have him home I needed to know how bad it was. The lungs themselves sounded pretty clear but his xray came back pretty much unchanged from March when he was in with his three viruses. The right lung took a beating during that bout and it was still looking the same. I was still confident bringing him home and confident that we could push through this one at home.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">We've managed to stay home (now that it is the weekend) but B's certainly not any better. His energy levels are still 'okay' but he was miserable on and off for the last few days. He is still coughing a very wet cough and is needing his ventolin (5 puffs every 4 hours) and his inhaled steroids. He's pretty darn wheezy as soon as he starts to crawl but I'm proud of him that he knows enough when he needs to slow down and take a break to catch his breath. It is however a whole lot more stressful weathering an illness at home then it is in ACH in many ways. Mainly because I have to pay attention to his breathing, resp rate, heart rate, work of breathing etc. 24/7 and contrary to popular belief (mine) I don't actually having any type of medical training! </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">We are off to the GI clinic tomorrow morning to review our GI issues and then see his Pediatrician tomorrow afternoon to check out the lungs.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">On the exciting news front we <u>finally</u> got B's new sweet ride, his amazing wheel chair! He is only one of two kids in Calgary with this chair (the other being our buddy Sawyer who was B's PICU neighbour when they were small) and it is great! He seems to love being up as high as he is and I think that we'll get a whole lot of use out of it this summer when we finally get a round of nice weather (that stays). The only downside is that it takes up my whole trunk of my van! We've just got some adapting to do.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Not too sure at first (it was past nap time and we'd been there awhile)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Kinda comfy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Now you're talking! I've got a tray too!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTj6PCAG98SEm03eYe6YJbrJrveVCMLtMNW7OnYOc-QuagAwgbuWj-jyS-2DDIyCAOFKOX7B6U8gW6ZJDMZOQJSjgEw0eGtGopu84CTM182IhyphenhyphenRJAbPRad2B-T0djd5-QwHqo7ik3WdJI/s1600/SAM_2925.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTj6PCAG98SEm03eYe6YJbrJrveVCMLtMNW7OnYOc-QuagAwgbuWj-jyS-2DDIyCAOFKOX7B6U8gW6ZJDMZOQJSjgEw0eGtGopu84CTM182IhyphenhyphenRJAbPRad2B-T0djd5-QwHqo7ik3WdJI/s1600/SAM_2925.JPG" height="400" width="237" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm thinking it's pretty cool!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">On the other great news front is that we've been discharged from the Thrombosis (blood clots) Clinic. They've been following B since his strokes when he was only a few months old and they are now confident that it's not a genetic condition. He's also had several major surgeries since then and none of them have resulted in anymore clotting issues. It feels pretty damn good to cross one of our clinics off the list!!! We are now down to only 21 clinics following B, only! </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">B is getting stronger each and every day and his swimming time at ACH (in their wee therapy pool) has paid off immensely. His core strength has changed dramatically since we started attending the pool, so much so that at the seating appointment for his new chair both Al (Rep) and Danette (Seating Clinician) were amazed.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Splashing fun!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I love my pool time!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">He is also making more sounds vocally and is consistently asking to be picked up (by humming 'Up, up Momma' and tapping on my leg. Mr.B is also doing more signing and is getting more confident in using them. What amazes me the most (well there's more than one thing obviously) is that he HUMS tunes. He can hum the whole song of 'Twinkle Twinkle' on demand (as well as a few others) and he does it relatively in TUNE! I knew this child was moved by music but man, it is a part of him without a doubt! Unfortunately we've been missing our music classes with Sarah at Rotary Flames House (due to B's nap time) but he's obviously getting enough musical input between myself and Justine (and the big boys too).</span><br />
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<span style="font-family: Georgia; font-size: large;">Sooner or later we might just see some real Spring around here (it snowed for 14 hrs straight yesterday) but for now we're just happy when we can get outside.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ferret tickles</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Handsome Dr!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Thinking the ferrets were pretty cool!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Rafe getting in the ferret snuggles</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">We're trying to sort out our summer plans (which will hopefully include the West Coast for 2 weeks) but arranging B's life that far in advance is always a risk. It is also harder and harder to travel as B grows because his equipment and the need for more things grow as well. We're pretty much at the point where we've out grown the ability to just sleep on floors and couches. If anyone owns or knows anyone with property for rent on the West Coast (<u>anywhere</u> on the Lower Mainland or on any of the Islands) for a very reasonable price (does that exist?) then please let me know! <a href="mailto:lialousier@gmail.com">lialousier@gmail.com</a> </span><br />
<span style="font-family: Georgia; font-size: large;">Our schedule can even be somewhat fluid if needed! </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Just a few of my blessings in life</td></tr>
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: x-large;"><strong><em>From Our Home To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-27548074374747334282014-04-26T15:57:00.005-06:002014-04-27T15:57:24.522-06:00The Art of Family<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">This is a post that most likely cause me some comments and possibly some back lash but I need to get some of this off my chest.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">To those that know me know that family (both blood and non) mean everything to me. I would drop many things in my life to help out a family member or a close friend. I have the most incredible sisters in my life that would and have dropped everything for me in a crisis, without them I would certainly be lost, so lost.</span><br />
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<span style="font-family: Georgia; font-size: large;">My father is ill, his health has been failing for some time now and it is all consuming to me at times when I think that I could lose him. We did a last minute trip out to the West Coast for Easter to see him and my Sisters (niece and nephew). We did essentially 3 days of travel total for a 5 day trip. Was it nuts? Yes. Was it worth it? So worth it. My original (insane) plan was to drive out myself with just the big boys and go for the 5 days. The thing was that the thought of leaving B behind (and me not being in control) was just too much to bear. So my darling husband did the next to impossible and took 5 days off work...5 days, that's love. We all went and it was what we needed, as a family and for our family. We even managed a whole 4 hours of an Easter dinner with my hubby's side of the family too. Would they have been hurt if we couldn't have fit them in, I would think yes but would they have understood (as the reason for the trip wasn't for pleasure per se), yes I think that they would have. Forgiveness is key in any relationship, big or small.</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">What I find shocking and what has been stuck in my craw, is the fact in this digital age of relationships that we can just silently 'cut' someone out of our lives with one click of a mouse. No regrets. Piss me off? Buh-bye from my life. Wow. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Now I'm not the easiest person to get along with all the time (my close family and friends will contest to this I'm sure!) but I try. I try to be the person my parents raised me to be, kind and understanding. So when a family member deleted me as a 'friend' on her Facebook page because I upset her with a comment it shocked me and hurt me to no end. I've been told that I need to get a tougher skin and I know that but I would expect that from a stranger or even someone who was not a big part of my life, but from family, no, not even for a second.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I know fully that I'm not 100% in the right in this scenario. I could have gone about my comment differently but I thought that I was doing it in a way that was non-confrontational and was not in any way trying to hurt or offend anyone. What I commented on was a response to someone posting on a comment about the weather and that "We must all be R3t3rd3d (I HATE this word) to think that..." yadda yadda yadda. My comment just simply addressed the fact that as a Mom with two special needs kids a different choice of word could have been used. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I tried to avoid commenting on it (the R word), I tried but the fact is that I'm an advocate for my children and they don't have their own voices yet to tell the world it's not okay to address <u>anyone</u> this way let alone those with extra needs. I was <em>trying</em> to point out that the word is offensive without being offensive myself and I even had a wonderful conversation with the woman who made the comment. She and I chatted a bit and she apologized (as did I because I didn't mean for her to feel badly) and agreed that it wasn't a great word to use. I was <u>proud</u> of myself! I thought I did a <u>good</u> thing. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Apparently not.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I managed to inadvertently "humiliate" and "disrespect" both the woman who made the comment and my family member (according to the family member). Not what I set out to do but apparently what I managed. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Was I wrong to speak my mind? I don't think so because without people standing up for what is right then there will never be a reason to change. Should I have sought out the woman who made the comment and tried to message her in private, I suppose that would have been a better choice (but I also think that I would have had backlash from that as well). So, <u>delete</u>, I'm not no longer a part of her life...wow.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I cried when I found out that she'd actually taken me off as a 'friend' because I went out of my way to reach out to her, to apologize. What my upbringing didn't prepare me for was that family could be so cold, so unforgiving.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">I would have appreciated and expected a conversation as two adults (I think I qualify by now at 39). </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">What it has led me to realize is that in our society, I've seen it time and time again, that we tend to treat our 'family' worse then we treat our friends. Why is that? Why is that acceptable? I know people that no longer talk to family members and I get it, there is usually a VERY good, sound reason for it. But in the digital age when you 'unfriend' someone it sends a pretty loud message as well. What pisses me off (well one of a few things) is that I generally don't care what people think of me but apparently I care a great deal about what my flesh and blood think of me.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Rylan asked me the other day 'if I heard the story about the boy that ran away from his Mom and almost died because of it'...(those times when you don't think they are listening). It was a story that the radio personalities were talking about, a 16 yr old ran away because he was upset with his parents. He hid in a planes wheel well and somehow (after going into a hypothermic state) survived a five hour flight to Hawaii. Rylan was so upset that anyone would be crazy enough to leave their Mom behind, their MOM! I tried to gently explain to him that he to will find a time when he doesn't agree with my choices as his parent. I love that at 7 he still finds this impossible to grasp but I know all too well that the day will come.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I am trying my hardest, in combination with my husband, to raise three polite, respectful and kind human beings. I would jump in front of a train for any of them in a heart beat. My children and my family are my life, they are why I get out of bed each and every day. I can't imagine a day when I would just cut a family member out of my life without a second thought. I may not be the best person at confrontation or even solving all of my 'problems' but I would hope to hell that I would at least try.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">What is the purpose of this post? Maybe I need to find closure from this hurt (as I can't just 'let it go' as I've been told to do) and maybe, just maybe someone who reads it will think about how important their family is to them and will do something different. Maybe someone will pick up a phone and talk to someone that misses them. Maybe someone will take the time to do something special for someone special in their lives (just because). </span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Life is far too short. Far. Too. Short. To short to live with any anger, resentment or without forgiveness (my door is always open to her when she is ready).</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">An update on B is coming soon, promise! :)</span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home To Yours...</em></strong></span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com2tag:blogger.com,1999:blog-3097992480923616089.post-12681704116633275682014-04-12T00:14:00.004-06:002014-04-27T15:33:02.108-06:00Hold Your Babies Close<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">It's been one of those 'life just seems to slide sideways' couple of weeks (years maybe??). I'm so blooming emotional these days too, which is not helping matters.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXHZUOPFLw7c4KMC4zCGwVuHbwci6BCdEf9xag1NktRmE-fbR0hIjBmBR_pECB_uKrpUhuuVpDCkA5MirKLnlRvWYW9Bmlrfwc4T-7kpU_39QQbO-XSZ0ZrcOBXxFLN_wMRinPCWCR0kI/s1600/SAM_2527.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXHZUOPFLw7c4KMC4zCGwVuHbwci6BCdEf9xag1NktRmE-fbR0hIjBmBR_pECB_uKrpUhuuVpDCkA5MirKLnlRvWYW9Bmlrfwc4T-7kpU_39QQbO-XSZ0ZrcOBXxFLN_wMRinPCWCR0kI/s1600/SAM_2527.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Someone called for "Dr.Love"??</td></tr>
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<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">B's doing not too badly, wheezy and tight lungs again, still pale as a wee ghosty but full of his Mr.B-ness so that is reassuring. We had our HomeCare Nurse and RT come by the house for a check-in yesterday and my heart dropped when Shaunee (RT) said his lungs were quiet up top (and then 'tight' after his ventolin). I'm trying to stay positive and trying to think that this is the last of those awful viruses leaving his little over-worked system...trying. </span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">I go through 'slumps' (for lack of a better term) every once in awhile and I'm seemingly swimming through one now. Those days where it's just damn hard to be positive, when I get annoyed when people complain to me about seemingly small things (hey, we're all allowed) and when I just want to put my head under my covers for about a week (or two). It maybe sounds like a 'poor me' day but it's really not, it's more of a 'screw the universe, where is Karma anyhow' kind of day (said with a small smile).</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwdhFgfvSPzLrkxV3tW3VxXpi7Ks0PWI2Jm3twDOk4f_Rlc26QzT_K3nHQZhTrepfVLt24RPLFpG69gOe4nJZxv5wX7UNlRqfSfuqXm7y1YAECoOA__mYKThc-cgfjjEUL2zJO0Dtwzb4/s1600/SAM_2654.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwdhFgfvSPzLrkxV3tW3VxXpi7Ks0PWI2Jm3twDOk4f_Rlc26QzT_K3nHQZhTrepfVLt24RPLFpG69gOe4nJZxv5wX7UNlRqfSfuqXm7y1YAECoOA__mYKThc-cgfjjEUL2zJO0Dtwzb4/s1600/SAM_2654.JPG" height="305" width="320" /></a></div>
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<span style="font-family: Georgia; font-size: large;">And then I think...suck it up Buttercup, you have three, THREE friends going through chemo right now, three. How the heck is that for perspective???</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiJyVRWy8GhW2ZAtUW4h4ADXhmuf8Lb6bcqsqD-sVOAxULXE3_cwoJNRjhFsI3CKxpvqXALE_fKVjxCpDi3xeOFLuyHkuH3yBqMsdLNmvn9CpRw8Ad9WHvYwjJ9qEl8IJEpT7wNiUxlQM/s1600/10152882_10153958541080258_1754088129_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiJyVRWy8GhW2ZAtUW4h4ADXhmuf8Lb6bcqsqD-sVOAxULXE3_cwoJNRjhFsI3CKxpvqXALE_fKVjxCpDi3xeOFLuyHkuH3yBqMsdLNmvn9CpRw8Ad9WHvYwjJ9qEl8IJEpT7wNiUxlQM/s1600/10152882_10153958541080258_1754088129_n.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing my OT<br />
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<span style="font-family: Georgia; font-size: large;">I'm sitting on the side of a single hospital bed at Rotary Flames House (ACH's Palliative Care hospice and respite) listening to my two big boys snore gently, life isn't that awful (my life anyhow) it's just sometimes (most times) it's really damn hard. I love this House and this organization but it is so very stressful spending time here for several reasons. So why are we here? For the big boys and for the memories that will be so very important for the big boys. I have put off booking time to stay (aside from when just B and I were here in Dec) for over a year because it is hard to be here. Hard to admit to myself that yes, this is our lives, and yes, I have a son that is classified as 'palliative'.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">I finally relented because Torin was <u>desperate</u> to come and spend another weekend here. Desperate to the point of writing a reminder on my calendar to let me know to call and book time! I kept putting him off because well, we've had only what, 12 admissions in the past year to ACH?? Sheesh! I called, I booked a weekend for all of us to be here, for all of us to have a 'family' weekend of love and memories (and extreme stress for Momma).</span><br />
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<span style="font-family: Georgia; font-size: large;">I spent alllllll morning packing (6 hours to be exact) sorting and repacking what all of us (mostly B) would need. We arrived late for our 2pm intake so I was already stressed (did I mention the 6 hours of prep?) and we found out that they had bumped us from the family suite due to an emergency. Not only that but they had to put B down at one end and us at another but by us I mean a single bed and a pull down couch in a room. Not quite what we'd planned. Do I get it, why we were bumped? Oh hell ya, I get it. I <u>completely</u> understand without a shadow of a doubt why they bumped us but it was disappointing that they didn't call and give me the chance to back out and reschedule for perhaps a quieter time.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">My first thought was that we should just turn around and head back home but then I saw how excited the boys were to be here and I just couldn't do it, I couldn't break their hearts. So I sucked it up, sucked back the tears of frustration (that it didn't work out as planned), exhaustion (no need to explain), disappointment (that I had it all 'planned' out) and extreme sadness for the family that bumped us out. I went through the intake process and got B all sorted out (he at least didn't freak out that we were here, huge bonus). The big boys were trying really hard to be patient, really hard, but they just wanted to go downstairs to the games room and couldn't go alone. They were so ready to begin their 'awesome' weekend! </span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">I got B settled with a Nurse's Aide and came into our family's 'room' and promptly burst into tears, the stress just flowing through. B's Nurse came and we talked and I explained that I understood but that I had tried to just make a 'happy' weekend for the boys and it wasn't going to be as planned. I knew for certain that we couldn't all stay as a family, there's no room. She convinced me to stay one night and re-evaluate what we wanted to do in the morning. I agreed and brought the big boys in to explain why things were going to be a bit different this stay. Of course they both instantly noticed my reddened eyes, of course. I sat them down and explained the situation and that the house was going to be crowded and busy and that we were going to have to be very quiet and respectful (more so than usual anyhow) if we were going to stay. I gave them the choice to either pack up and go home and do something great there (what I had no clue) or to stay only one night...They were both very disappointed, Torin more so as this weekend was really for him (there is a microwave in the family suite right next to the bed where he and Ry slept last year!!). They both were adamant about staying for the night and I swore that I would do what I could to still make it as great as I could for them.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgyDtqAf-gugtEBwApEs2Qlz4WRpaiTMmXBSdbFNfnJHESz7NVWM_ihZvK42JFrGfU1eKaEgFsitmKLO_UZhGBWwKiqbf3z3SgKH8mzrVH2Dxbc3EMrLlBc7AWEFg_ycb0BXhyLY7DSrM/s1600/SAM_2733.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgyDtqAf-gugtEBwApEs2Qlz4WRpaiTMmXBSdbFNfnJHESz7NVWM_ihZvK42JFrGfU1eKaEgFsitmKLO_UZhGBWwKiqbf3z3SgKH8mzrVH2Dxbc3EMrLlBc7AWEFg_ycb0BXhyLY7DSrM/s1600/SAM_2733.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wii!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpsJy4-J241STTKGU7MEzSHfsi3Z8kreGtXFXIJfBzMSvUH237ARa16DIDYZajSn3BisZIioCrDxfncPKewsuAGZwJ6G9sfleJWBNnKE9qjL9I_g1d9yNYj6bg8MiSYDkN_uBsDUsEYf0/s1600/SAM_2745.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpsJy4-J241STTKGU7MEzSHfsi3Z8kreGtXFXIJfBzMSvUH237ARa16DIDYZajSn3BisZIioCrDxfncPKewsuAGZwJ6G9sfleJWBNnKE9qjL9I_g1d9yNYj6bg8MiSYDkN_uBsDUsEYf0/s1600/SAM_2745.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">T kicking Daddy's butt at air hockey</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWQOmZerEjd1Vz_tMkqfRUXbYxHpLkJzv1S6e8MZsV5l32tWxq65Hj2Zrnw7AKGOHbaCVmIt2Iy3HB1kK7R5s8-kYfqWuTrIbvK4zRtJj4QhSs2xohLKwvT_OM1X-CFdmivNV4r42KQ4A/s1600/SAM_2722.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWQOmZerEjd1Vz_tMkqfRUXbYxHpLkJzv1S6e8MZsV5l32tWxq65Hj2Zrnw7AKGOHbaCVmIt2Iy3HB1kK7R5s8-kYfqWuTrIbvK4zRtJj4QhSs2xohLKwvT_OM1X-CFdmivNV4r42KQ4A/s1600/SAM_2722.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">hangin in the tomato chair at RFH</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqCL2-WXg_BGJKsw8tQ5te5SvRapbLKktaByhwBz9V39tF5889Ctt9fhM0BkaKbCBeAS77UP8es2BHmlMhsbf0LvtWYifcxQPgrMpIomcQUFj0Dt4Xs3qcEmB64kiYA5muMXWuGsBeRa4/s1600/SAM_2752.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqCL2-WXg_BGJKsw8tQ5te5SvRapbLKktaByhwBz9V39tF5889Ctt9fhM0BkaKbCBeAS77UP8es2BHmlMhsbf0LvtWYifcxQPgrMpIomcQUFj0Dt4Xs3qcEmB64kiYA5muMXWuGsBeRa4/s1600/SAM_2752.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cheers to family time, such as it was</td></tr>
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<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">They did get some time in the games room on the Wii and air hockey tables AND they got to eat 'the best food' ever for dinner (pasta by the wonderful chef, Joe). </span><span style="font-family: Georgia; font-size: large;">The night Nurse found us a second single bed so that I at least didn't have to sleep in the chair and Mike headed home for the night (that King bed all to himself!!!). </span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">So here we are, lined up like sardines but hey, I'm feeling pretty warmed because I am witnessing the beauty of my sleeping children (ever notice that you love them even more when they are asleep??). I'm not any less stressed (unfortunately) but I can at least see some of the positives stretched out in front of me (or snoring beside me). No the weekend won't go as planned (and Mr.B and Momma got all stressed about being here for naught) but I am going to still try for some awesome family-ness and am open to letting a bit of light come through my dark clouds overhead. The staff keep telling me to leave B here and relax (I'm as relaxed as I'm gonna get at this point in my life) but having a family time weekend isn't a family time weekend without our Mr.B. So home we'll go tomorrow.</span><br />
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<span style="font-family: Georgia; font-size: large;">Tomorrow is another day.</span><br />
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<span style="font-family: Georgia; font-size: large;">My heart aches a great deal and sends many, many blessings to the other families here under the same roof as me. It is certainly not a quiet or calm night here for others. They may not have the option to go home tomorrow as a whole family. Hold your babies close, this is part of the reason that life is just sometimes so damn hard.</span><span style="font-family: Georgia; font-size: large;"><span id="goog_1373457608"><br /></span></span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our (Sardine Packed Rotary Flames House) To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-61665212140504876002014-04-02T22:44:00.000-06:002014-04-02T22:44:30.742-06:00Accepting Autism<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">This isn't a 'Mr.B' post per se (but who knows what our future diagnoses hold for him) but an important to my heart post!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh59QaW01wjWZkYTlRvdpXRVCxXl4axuIYxK5ugf0eTDSfv6U6DV6ooJ4dCJH1s4Dw0JOdD_5fAIT-_RaGoEfDwlBt2k_-_qzSpD8CkB5gRVuMAiUwxmtqkvscMr6pt4-FHVjNLVhYFD0c/s1600/autism+tree.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh59QaW01wjWZkYTlRvdpXRVCxXl4axuIYxK5ugf0eTDSfv6U6DV6ooJ4dCJH1s4Dw0JOdD_5fAIT-_RaGoEfDwlBt2k_-_qzSpD8CkB5gRVuMAiUwxmtqkvscMr6pt4-FHVjNLVhYFD0c/s1600/autism+tree.jpg" height="630" width="640" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_Gq4Vekf3awBWDAsMkNz2lLcj5mqOH-ouuOu2JOiwKdFcF5OVXKttokzVLllgqVminog_tvRp4F2jQ-OCeXDH9Gj21NI7arNGh17W6ZdjAv62RpkyDUBmaUpEk6cD8BXkX9j-F_euoo4/s1600/Autism.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_Gq4Vekf3awBWDAsMkNz2lLcj5mqOH-ouuOu2JOiwKdFcF5OVXKttokzVLllgqVminog_tvRp4F2jQ-OCeXDH9Gj21NI7arNGh17W6ZdjAv62RpkyDUBmaUpEk6cD8BXkX9j-F_euoo4/s1600/Autism.jpg" height="200" width="199" /></a><span style="font-family: Georgia; font-size: large;"><span style="font-size: x-large;"><strong>What is Autism?</strong></span><br /><br />It surprises me that in 2014 that I still get asked this question on a somewhat frequent basis. I guess part of it is that I live the life and therefore have researched it extensively (for over 5 yrs) which is why I'm pretty clear what Autism is but what saddens me is how much is seriously unknown still by the general public. This is a spectrum that affects as many as 1 in 50 kids (depends on WHO you ask), how is it that so many know so little?</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">As I've come to know being Mr.B's (Unique kid extraordinaire) Momma is that when something like a diagnosis takes you off guard you learn about it. When our oldest son Torin was (finally) diagnosed with Autism five years ago I threw myself into learning all I could about it. Yes, I'd heard of it before but I didn't really 'know' much about it.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">So what <u>IS</u> Autism??</span><br />
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<div class="vk_ans" style="margin-bottom: 0px;">
<span data-dobid="hdw"><span style="font-size: x-large;">au·tism</span></span></div>
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<i><span style="font-size: x-large;">noun</span></i></div>
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<span style="font-size: x-large;">noun: <b>autism</b></span></div>
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<span style="font-size: x-large;"><strong>1</strong>. </span></div>
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<span style="font-size: x-large;">a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts</span></div>
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<span style="font-size: large;"><strong>Clear as mud right??</strong></span></div>
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<span style="font-size: large;">The biggest thing that you need to know about Autism is this:<br /><strong><em></em></strong></span></div>
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<span style="font-size: large;"><strong><em>"If you've met one child with Autism then, you've met ONE child with Autism." </em></strong></span></div>
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<span style="font-size: large;">That's it.</span></div>
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<span style="font-size: large;">Autism is called a 'Spectrum Disorder' because no two children present with all of the same issues/symptoms/etc. The Spectrum actually covers off several different Disorders and Autism is only one of those disorders.</span></div>
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<span style="font-size: large;">The appearance of Autism diagnosed in your child is as unique as the child diagnosed.</span></div>
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<span style="font-size: large;">Is there such a thing as 'high functioning Autism'? I suppose that it makes people feel better to call a child 'high functioning' but if I drive a car and you don't does that make me a higher functioning person then you? I'm not a fan of the term, my child is just a 'functioning' child, that's it. Yes, there are some children/adults that have severely disabling Autism but to call my child higher functioning then theirs is just wrong in my opinion. Their child is also a functioning child, they just do it in the way the can and need to.</span></div>
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<span style="font-size: large;"><em>So how can I possibly learn more about it then if it looks different in each individual diagnosed with it??? </em>What you need to learn (or strengthen what you already know) is that ACCEPTANCE is the key to Autism.</span></div>
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<span style="font-size: large;">You don't need to know what all the possible presentations might be, you don't need to know how the diagnosis presents in each kid (that's for the parent's to know) but what we'd (the parents) like you to know is ACCEPTANCE.</span></div>
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<span style="font-size: large;">Accept that our child might be a bit 'odd' or 'quirky' or want to talk about ceiling fans, elevators, phones, microwaves, etc. for hours on end. </span></div>
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<span style="font-size: large;">Accept that our child might have a huge, in your face, meltdown in public (no we don't need to hear parenting advice from passerby's that think they know better).</span></div>
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<span style="font-size: large;">Accept that while you might feel uncomfortable around our child, he is our <u>child</u>. He could have just as easily been your child. As parents we've had to accept that we created a child with a disorder (this isn't the forum to talk about self-blame but as a Mom with two special needs kiddos self-blame is huge) so we need you to support US in accepting our child. An Autism diagnosis can find out our true supporters in our lives pretty fast.</span></div>
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<span style="font-size: large;">Accept that you might need to encourage, educate and foster compassion in your own 'typical' children about ours with special needs (all needs). Our children need friends too, they need love, compassion and encouragement, just as yours do.</span></div>
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<span style="font-size: x-large;">Things that you might not want to say to the parent of a child with ASD:</span></div>
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<span style="font-size: large;"><em>Oh, he looks so normal! </em>(???)</span></div>
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<span style="font-size: large;"><em>Are you sure? He doesn't look retarded.</em> (please, PLEASE don't ever use that word)</span></div>
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<span style="font-size: large;"><em>Well, he must certainly be high functioning then</em> (see above 'high functioning' comment)</span></div>
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<span style="font-size: large;"><em>Autism, what's his special skill?? </em>(not all kids on the spectrum have prodigy potential!)</span></div>
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<span style="font-size: large;">Yes, these are all things I've had said to me and more (none said in a or meant in a harsh way).</span></div>
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<span style="font-size: large;">All three of my children are my pride and joy, it just so happens that two of them need a bit more assistance in life with some things! </span></div>
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<span style="font-size: large;">Special Needs children are an amazing blessing and experience but as parents we often feel very alienated and alone in so many ways. Take a moment to even just say 'hello' to a parent of a SN child, they will appreciate it more then you know.</span></div>
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<span style="font-size: large;">Happy Autism Awareness Day All!!!</span></div>
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: x-large;"><strong><em>From Our Home (wearing my blue proudly today) To Yours...</em></strong></span></div>
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Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-84217576139557369372014-03-25T22:38:00.000-06:002014-03-25T22:38:05.992-06:00A Mr.B I-Like-To-Mess-With-Doctors Surprise!!<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">WE'RE HOME!!! Hurrah!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzTS37aCSeCrD-R1MO1P9ipMvqATR8qxirsM7SvBkfOE7DR2_b5BpDp8X7IHmXCWXYMGaLKsm_my68VhRtf8AT35qbhUTZS3mYgPB0yzEvqi3oK-gUluH_rWvolUXdKHPfdkqNzOY6BU0/s1600/SAM_2497-001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzTS37aCSeCrD-R1MO1P9ipMvqATR8qxirsM7SvBkfOE7DR2_b5BpDp8X7IHmXCWXYMGaLKsm_my68VhRtf8AT35qbhUTZS3mYgPB0yzEvqi3oK-gUluH_rWvolUXdKHPfdkqNzOY6BU0/s1600/SAM_2497-001.JPG" height="257" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All four of my boys where they are supposed to be!</td></tr>
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<span style="font-family: Georgia; font-size: large;">In complete typical B fashion (he likes to mess with people's minds) he <u><strong>passed</strong></u> his oxsymmetry (oxygen) test last night! What does that mean? Well we're home WITHOUT oxygen support. How? How? How? I swear he just plans to mess with people! He was desating still yesterday on exertion and we all were expecting him to fail the overnight test...nope, not Mr.B!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Music Therapy with Sarah</td></tr>
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<span style="font-family: Georgia; font-size: large;">It's great news (obviously) but since he was still desating yesterday this Momma is going to be a little (okay a lot) vigilant while he sleeps for the next I-don't-know week or so (who am I kidding, like it ever changes! Sleep? Bah!). He was certainly excited to make the transition home and was overstimulated to the nth degree tonight with the big boys.</span><br />
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<span style="font-family: Georgia; font-size: large;">My van wasn't actually ready this afternoon (of course because why would I need it back?) so we drove home in another car which kind of threw B off. When I got out of the passenger side door when we got home he pitched a fit thinking I was leaving him inside! He didn't even give me a chance to get out all of the way to even see if I was taking him! Nutbar!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Okay! I'm ready to go now!!</td></tr>
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<span style="font-family: Georgia; font-size: large;">He lovingly had a nice long, hot bath tonight and knee walked around the whole upper floor with my Isagenix bottles...such bliss for him.</span><br />
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<span style="font-family: Georgia; font-size: large;">He also went right to bed with no fuss at all (good) but I know not to get too comfy and relaxed, he is Mr.B after all!</span><br />
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<span style="font-family: Georgia; font-size: large;">I'm feeling crappy due to another RA flare up (stress is a pain, literally) in my hip/back but am certainly feeling a bit more relaxed having all of my babies under one roof tonight. We had a movie night to celebrate tonight and watch 'Frozen' for the first time (well I saw parts of it). It's nice to be able to tuck all three of my kids into bed and be present for it all (not calling from the hospital to say goodnight).</span><br />
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<span style="font-family: Georgia; font-size: large;">Tomorrow we are back at ACH (big surprise) for an appointment with our Child Development Team nice and early. It won't be long until we are back in the swing of this crazy at-home-going-to-ACH-for-multiple-appointments-each-week-life either.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Bye-bye (for now) ACH! Thanks for taking good care of me (again)!</td></tr>
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our (Snuggled Down For The Night) Home To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com1tag:blogger.com,1999:blog-3097992480923616089.post-71437483049136980232014-03-24T21:59:00.001-06:002014-03-25T11:25:24.097-06:00There Is No Place Like Home<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">There is no place like home....well we're not there <u>yet</u> but we are lookin' to spring this joint tomorrow afternoon! I'm even willing to take the risk and say it (or type it) close to B because he's SO ready to be home.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ready to come out of my cage...</td></tr>
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<span style="font-family: Georgia; font-size: large;">Rental car goes back, I get my van back (my $2150 bill to go with it...wahhh and damn cement wall that got in my way when the road was a sheet of ice) and I get my youngest home where he belongs...should be a good day!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5CXpfhw0MENnaPXElI27Z4ZGX8zH2ysIvxgIQ9IIzAPGGiWTR_aEjd57XeDzJpF6HNhKMznBfAhUZEEiKgoXX7lxFs3e0wCVnN0GXou3zjQEKcu0CGQnGNzAvI4-rysYYDaFoy2JqSCM/s1600/SAM_2475.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5CXpfhw0MENnaPXElI27Z4ZGX8zH2ysIvxgIQ9IIzAPGGiWTR_aEjd57XeDzJpF6HNhKMznBfAhUZEEiKgoXX7lxFs3e0wCVnN0GXou3zjQEKcu0CGQnGNzAvI4-rysYYDaFoy2JqSCM/s1600/SAM_2475.JPG" height="400" width="318" /></a><span style="font-family: Georgia; font-size: large;">He's certainly turned back into the full 2 yr old that he's supposed to be which means he's feeling pretty good (and so very bored).</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">We're still working on feeds but we are at least to a point where I can get what I need into him at home. It will take another few days or so to get completely on track but I think we'll get there. My only concern is how his guts are still not too happy about eating but I'm hopeful that they will settle down at home too.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdteiKTnJ_hcsagq5lJuAvYgXB2PWaqhHEzFijcPjAy4hgGvfl5EjS9TBHqvRd_cJjX1SJrVtVh8sxjT5pMGmSzEhaytiZ_uYzqKvfeY4F4fqHVsI0ldjBcPdiHm9olGAw57Q-5RjJ8mM/s1600/SAM_2478.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdteiKTnJ_hcsagq5lJuAvYgXB2PWaqhHEzFijcPjAy4hgGvfl5EjS9TBHqvRd_cJjX1SJrVtVh8sxjT5pMGmSzEhaytiZ_uYzqKvfeY4F4fqHVsI0ldjBcPdiHm9olGAw57Q-5RjJ8mM/s1600/SAM_2478.JPG" height="371" width="400" /></a><span style="font-family: Georgia; font-size: large;">We're doing an over night oxsymmetry test tonight (at ACH) to gauge his o2 needs. Basically they wouldn't run it if they didn't think he'd fail...which is fine. We can come home on 02 again, been there, done that. It will certainly be more of an adventure since it's been 9 mths since he last needed it at home and he's waaay more active now. Any bets on who trips on it and does the first face plant?!</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">It's certainly been a stressful visit, B's not been this sick (Respiratory sick) for quite some time (Christmas pneumonia aside) and I'm hoping that we won't have to be 'Stepped' again any time soon! On the flip side? It's been great seeing familiar faces again, both staff and family and being on Unit 2 has made all the difference with that.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHr46GKJLIcPCMR9BVhkLyCdPJYRyL4p4JBItNuHb-Dr75b1RHV31VkPNOzUFTqrWyB8HKpT9RanRBQDgdWiiMckt4cULJtKUjnzS7uActa07257O5wFnipxVZ5I5untsPAqpFb6jM65Q/s1600/SAM_2480.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHr46GKJLIcPCMR9BVhkLyCdPJYRyL4p4JBItNuHb-Dr75b1RHV31VkPNOzUFTqrWyB8HKpT9RanRBQDgdWiiMckt4cULJtKUjnzS7uActa07257O5wFnipxVZ5I5untsPAqpFb6jM65Q/s1600/SAM_2480.JPG" height="322" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love me some Ry-Ry time! :)</td></tr>
</tbody></table>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiViZGTDETSLtJ6fdJ4zCK2xos3rIxpJ48ZDJ7tDvrdeI3hECnPv2Em8F-FtCBGDFlATelI6NfRfzeMzLvaTd9UTYVNPnK9wU3oQKS3R2O3CckYPp72tX34x6WZods0lzldp0dA3xbGhrw/s1600/SAM_2481.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiViZGTDETSLtJ6fdJ4zCK2xos3rIxpJ48ZDJ7tDvrdeI3hECnPv2Em8F-FtCBGDFlATelI6NfRfzeMzLvaTd9UTYVNPnK9wU3oQKS3R2O3CckYPp72tX34x6WZods0lzldp0dA3xbGhrw/s1600/SAM_2481.JPG" height="320" width="400" /></a></div>
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">So he's still not 'well' but he's certainly much less sick (pretty sure I'm writing the new English language here) then he was a week ago (or two for that matter). I'm happy to work out the rest of the details at home, where he'll hopefully be in a 'cleaner' environment (okay, I had to guffaw as I typed that). He'll be less exposed to the hospital germies (I'm sure three viruses are enough for now)!</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">Home is where the heart is...well home is wherever Mr.B is really! <strong><em><span style="font-size: x-large;">:) </span></em></strong></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0lGfgzFHRfhRxvdVj4WlJr5iCdXa9O2zPjlmNxKF1wNl7tcORsPfsHpdX0mIf5tqsBQjaHt0K9x3iJ8wkHTtt1tOF7mo6EkfhyphenhyphenCTnBwhxLkLkDN1BoJSRlILTpb0ksFiDIgT-kBvqeRs/s1600/SAM_2471.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0lGfgzFHRfhRxvdVj4WlJr5iCdXa9O2zPjlmNxKF1wNl7tcORsPfsHpdX0mIf5tqsBQjaHt0K9x3iJ8wkHTtt1tOF7mo6EkfhyphenhyphenCTnBwhxLkLkDN1BoJSRlILTpb0ksFiDIgT-kBvqeRs/s1600/SAM_2471.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">countdown!</td></tr>
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<span style="font-family: Georgia; font-size: x-large;"><strong><em><br /></em></strong></span><br />
<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our (Last Night On Unit 2 for now) Home To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-28768666963143167752014-03-23T15:21:00.001-06:002014-03-23T15:52:00.523-06:00Dear Anonymous<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Dear 'Anonymous',</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">The fact that I am taking any time and energy out of my day to address your 'comment' annoys me. It annoys me that you've upset me and it annoys me that you've made a derogatory comment under an 'Anonymous' name and that I can't reply directly to you.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Here are the parameters of this site in case I've not been crystal clear in the past:</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">1) This is a blog written by Me for ME. The fact is this is a blog written to keep me on this side of sanity while I deal with the pressures that life has handed me. If you chose to join me on my journey then I'm happy to have you along. HOWEVER there is and <strong>will be no tolerance EVER for any rude, inappropriate and inexcusable comments</strong>.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">2) This blog is written for <strong>EDUCATION</strong>, to try to let people know about disabilities in an open and caring manner.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">3) This blog is about <strong>TOLERANCE</strong> and <strong>ACCEPTANCE</strong> (again, see number one if you are at <u>all</u> confused)</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I am disgusted and greatly saddened that you thought for even a moment that insulting <u>any</u> of my children could possibly be acceptable. If you wanna see this Momma Bear mad, well then you've certainly succeeded. My first reaction to your comment was extreme anger, with my heart in my throat but now I'm just sad. I'm sad that for one second someone could insult an innocent, defenseless, caring, wonderful and angelic child.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I realize that by writing this blog that I've put my life 'out there' for the world to see and I realize that not everyone in this world has good intentions...BUT what I also realize is that I have the power to tell you that you are NOT welcome on my site ever again. Ever. Again.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I have many, many other things that I could say to you and about your comment but then I'm not being true to myself. My first reaction was to blast you but then hey, I'm no better then you am I?</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">This site is for compassionate, wonderful, caring and empathetic human beings only. No negativity, drama, or derogatory comments will be tolerated.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I hope that you take the time to do something good for someone else today, Karma will see you coming (and so will my family and friends).</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Sincerely,</span><br />
<span style="font-family: Georgia; font-size: large;">An extremely (trying not to use expletives) sad Momma</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRL0kjI9my9MNmk9j1yODbJzIQbaVIuqy6BcsJPiQPz7oEJ1XAbQJur1dqHd5TWcv4-LsOdAgPknG-5sZtXJuqRVST6VS_aFQi9CPFs-wyJSrgIgmcDLccGUK2XENY0T7dLIMvZRhk9n8/s1600/destiny.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRL0kjI9my9MNmk9j1yODbJzIQbaVIuqy6BcsJPiQPz7oEJ1XAbQJur1dqHd5TWcv4-LsOdAgPknG-5sZtXJuqRVST6VS_aFQi9CPFs-wyJSrgIgmcDLccGUK2XENY0T7dLIMvZRhk9n8/s1600/destiny.jpg" height="400" width="321" /></a></div>
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<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home (Unit 2) To <u>No Longer</u> Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com1tag:blogger.com,1999:blog-3097992480923616089.post-53220735713621104772014-03-22T21:50:00.001-06:002014-03-22T21:52:38.851-06:00Big Brother Love-Bomb<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYANh-EQR7Zcz8siCWqTYZTW2192GOym9XMrZqGCpNIqJD92MJoRIDMlpKGK9lUgFPdPC0kYaxm_wFGUvggppkGK4iQcRcRl9uVSiPxxpka-QaNZunpGW8Dcz23uYwkcfcFWUznaLrR8M/s1600/SAM_2393+%25282%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYANh-EQR7Zcz8siCWqTYZTW2192GOym9XMrZqGCpNIqJD92MJoRIDMlpKGK9lUgFPdPC0kYaxm_wFGUvggppkGK4iQcRcRl9uVSiPxxpka-QaNZunpGW8Dcz23uYwkcfcFWUznaLrR8M/s1600/SAM_2393+%25282%2529.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">B was sleeping when I got there this morning with a stethoscope wrapped around him...<br />
all the comforts of home!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUtnrHdOvqnHK-B_tV-SO_xE00xkpvYvaeharEFaKsvrHKoS7AHz49L3aD-1kZhbbfDn-9gcCrDA0Tz-ZYHyQ9YXx0A5_P9nt7kdpduZ0CN6Qs_pwYH7KKHI7j7JYVXA17KNMPsopoBkQ/s1600/SAM_2396+%25282%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUtnrHdOvqnHK-B_tV-SO_xE00xkpvYvaeharEFaKsvrHKoS7AHz49L3aD-1kZhbbfDn-9gcCrDA0Tz-ZYHyQ9YXx0A5_P9nt7kdpduZ0CN6Qs_pwYH7KKHI7j7JYVXA17KNMPsopoBkQ/s1600/SAM_2396+%25282%2529.JPG" height="245" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Perhaps it's time for new jammies??</td></tr>
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">The funny thing that I realized is that the 'healthier' B gets, the <u>harder</u> his hospital stays become. Now don't think for a minute I'm complaining that he's getting better, far from it, but he's bored and he's, well, 2!</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYJ8ScwpzwcaMajTvuKsmVYeyKN7bBwQj6747DaT98xsE5Y-l9ZEP5NJp26lZHGstKEE68l1EiLqGLoSF3iANm-UJfUT2A8oOqaSSq2MQfFurIZoFjh5DJyVqPA6bADZMwf1SnhQW2sVI/s1600/SAM_2400+%25282%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYJ8ScwpzwcaMajTvuKsmVYeyKN7bBwQj6747DaT98xsE5Y-l9ZEP5NJp26lZHGstKEE68l1EiLqGLoSF3iANm-UJfUT2A8oOqaSSq2MQfFurIZoFjh5DJyVqPA6bADZMwf1SnhQW2sVI/s1600/SAM_2400+%25282%2529.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet moment<br />
</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdyPyk0-hNmQQnm_km_gsiZOdLC0oHHnF9549rO_9Hs5GOMqt54nlTL54EMW4Xxu895xp8gKle1QQ_QPxHM8PgE7XJPvNBGhP15pHYUMOv-gfEpkE1c4r5ayZq9kADqVPmkbAyWPcAYsw/s1600/SAM_2401+%25282%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdyPyk0-hNmQQnm_km_gsiZOdLC0oHHnF9549rO_9Hs5GOMqt54nlTL54EMW4Xxu895xp8gKle1QQ_QPxHM8PgE7XJPvNBGhP15pHYUMOv-gfEpkE1c4r5ayZq9kADqVPmkbAyWPcAYsw/s1600/SAM_2401+%25282%2529.JPG" height="400" width="326" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And...we're awake!</td></tr>
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<span style="font-family: Georgia; font-size: large;">I've gone from having my heart in my throat watching him struggle for air to the same feeling but because he's bashing (yes, <u>bashing</u>) his two year old head into the side of the crib when I have to do something like go three feet away to the bathroom. He actually bruised his wee forehead today and it saddens me that I can't just scoop him up and bring him home. It also makes me realize that as he gets older these stays are just going to get harder.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I'm not a first time Mom, I've done two other 2 yr olds, but it's still hard not to react when he's self harming for attention. I am feeling like a rookie at this again! He was bashing yesterday and his Nurse looked in and I calmly confirmed that yes, he was bashing because I had to go refill my water bottle. The hard part is that he doesn't feel pain like you or I, his pain sensors are very different. He's had to deal with a great deal of pain in his little life (not to mention brain injuries and yaddas yaddas) so his pain tolerance is much higher than the average 2 yr old.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">This too will pass (oh god I hope this too will pass!!!!!)...</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhonVzy0zSqFzw67bHmUVwIT3mzMvLsHOu2bOgxXiCJr2Ypd7AOUksvxsgY-k_vpHEwncXnyQknxec_DAscSIp31XlVTfitwoIKQkNlruktLsL01n4Z1NK04vqNPKuVdVIPBaRFfHtCzws/s1600/SAM_2408+%25282%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhonVzy0zSqFzw67bHmUVwIT3mzMvLsHOu2bOgxXiCJr2Ypd7AOUksvxsgY-k_vpHEwncXnyQknxec_DAscSIp31XlVTfitwoIKQkNlruktLsL01n4Z1NK04vqNPKuVdVIPBaRFfHtCzws/s1600/SAM_2408+%25282%2529.JPG" height="400" width="346" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAzGOLIHVjK3rTFslSoo6-EHU14RWvdxrBJzraGgxEdU9tCjLG-OijA1Dq4IgYvS-LpNan1nM0ufjr8lGavSyAB-R6qKrhHK3B84tWXsCm9cAaLzfu-Gu1_qpD83hM2BZJTi-2IXeYNzI/s1600/SAM_2414+%25282%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAzGOLIHVjK3rTFslSoo6-EHU14RWvdxrBJzraGgxEdU9tCjLG-OijA1Dq4IgYvS-LpNan1nM0ufjr8lGavSyAB-R6qKrhHK3B84tWXsCm9cAaLzfu-Gu1_qpD83hM2BZJTi-2IXeYNzI/s1600/SAM_2414+%25282%2529.JPG" height="400" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big brother hugs!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0PGOQUx-nFVIyNy2KF8KjGqnr4qXXRN-n0-K4J9odq8Gs2GfhQBra1JXYYsHpRsrsptGbcbj8ZJYQjAlu8_-SxOmWf69A8Mpkx-id_JiJRzfGcvL_1I72km3MnMecyfZ3FvPVFQYQ9hg/s1600/SAM_2418+%25282%2529.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0PGOQUx-nFVIyNy2KF8KjGqnr4qXXRN-n0-K4J9odq8Gs2GfhQBra1JXYYsHpRsrsptGbcbj8ZJYQjAlu8_-SxOmWf69A8Mpkx-id_JiJRzfGcvL_1I72km3MnMecyfZ3FvPVFQYQ9hg/s1600/SAM_2418+%25282%2529.JPG" height="400" width="365" /></a><span style="font-family: Georgia; font-size: large;">The wonderful part of the day was seeing B and his biggest brother Torin shower each other with love. Rylan is running a fever and stayed home with his Dad which gave Torin the opportunity to come to the hospital alone with Momma. B was SO excited to see him and as you can see from the photos, they were both pretty happy to spend the time together. I had more than one person comment on their special relationship and I couldn't agree more.</span><br />
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<span style="font-family: Georgia; font-size: large;">Colleen (one of B's prior Homecare therapists) stopped by for a visit this morning and then went in search of a play mat for B. I got B out of the crib and on the floor and Torin got down there beside him. What happened next was pure magic! Ohmygoodness we laughed and laughed. B was SO happy and laughing SO hard that he was only sating at 72%. I had to actually lay him down and get him to breathe a bit before I could let him continue! Of course the fact that he was setting off the monitors just made him laugh harder...</span><br />
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<span style="font-family: Georgia; font-size: large;">The great health news is that B's IV was pulled last night (after it stopped functioning) and he's on his regular formula again. We've switched all the meds back to his g-tube and he's doing well on them. He was a bit leaky today but he was also trying to keep up with his big brother. I've outlined his feeding schedule to titrate his feeds up over the next three days and then we should be able to COME HOME.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Finally a bath after two weeks for the stinky boy! :)</td></tr>
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<span style="font-family: Georgia; font-size: large;">He is also down to a 1/2 litre of oxygen which is reassuring but now that he's more active he's having more desats. It's not that big of a deal to have the occasional desat (we all do) but he's taking a bit to 'recover' from them. We did do an hour on 'room air' today when I got to throw the stinky boy in the tub (12 days on IV means 12 days with NO bath) and he did okay but not great. He was visibly working his shoulders after the hour (but sating well) so he's not ready yet and that's okay. If we need to come home on oxygen supports, we'll come home on oxygen supports. I have to stop and remind myself that there were THREE viruses in there and he's going to need three times the amount of support to 'heal'.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Reprogramming my IV pumps last night...</td></tr>
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<span style="font-family: Georgia; font-size: large;">We did also get back his latest swabs and he is still positive for the RSV and the Adenovirus so we're still on isolation (which with all the bugs in the hospital isn't a bad thing but if I could take him for a walk life would be nicer!!).</span><br />
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<tr><td class="tr-caption" style="text-align: center;">WAIT! How come you never ask for my 'serious' face Momma??</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Oh right! It's because I'm a goof ball!!</td></tr>
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<span style="font-family: Georgia; font-size: large;">As I was having a chat with a friend today I was commenting to her that it takes a week to get back into the swing of hospital living but it takes two weeks to adjust getting back home. </span><span style="font-family: Georgia; font-size: large;">Well hopefully as of Tuesday or Wednesday (shh don't tell B) we'll be getting back into the transition home.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Hangin' onto the crib for comfort?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGi-WhEW_e0g3YQIk_COLITeez3NUQ1uoVmUPYFQkWQpqedorKSFeIDHpKB2UDXMZprpOo80FfXtnTueMCPi71G-wOHDIdyHJvtb_kffJlewOFtyqEchm45j38RG5EQ89dXMjxGz0lOe0/s1600/SAM_2321.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGi-WhEW_e0g3YQIk_COLITeez3NUQ1uoVmUPYFQkWQpqedorKSFeIDHpKB2UDXMZprpOo80FfXtnTueMCPi71G-wOHDIdyHJvtb_kffJlewOFtyqEchm45j38RG5EQ89dXMjxGz0lOe0/s1600/SAM_2321.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Blankie boy!</td></tr>
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home (Unit 2) To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com4tag:blogger.com,1999:blog-3097992480923616089.post-34168639771010116422014-03-21T00:00:00.000-06:002014-03-21T00:00:16.207-06:00The Raw Truth<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Today was certainly a better day (as was yesterday) and Mr.B is getting to be more and more like his ol' self each day. It never fails to amaze me how he can simply 'bounce' back from needing critical care.</span><br />
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<span style="font-family: Georgia; font-size: large;">B's oxygen is now down to only 1 litre which is just so great. I'm sure we can wean it further tomorrow again and that he'll be able to come off it soon. I know he'd like to get his nostrils back again not to mention one fewer set of cords/tubes.</span><br />
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<span style="font-family: Georgia; font-size: large;">It's been a hard two days because I've been spending time in meetings for the Critical Care Strategic Network that I belong to so I've been missing my B. I did get my chance to tell B's story this morning to our group and it was very well received. This isn't the first time that I've 'presented' his story but this is the first time that I did it from a 'raw' perspective. I told it completely from the heart, reading from some of the early blog posts. The group today were all professionals within Critical Care in Alberta (aside from the other Patient and Family Advisor like myself). I wanted to really let it sink in how life looks on the other side of the bed in Critical Care, a true look at a Family's view.</span><br />
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<span style="font-family: Georgia; font-size: large;">It was an hour long presentation that I <u>bawled</u> my way through my dry (or wet rather) run of last night (thank you Ang for the songs). It is so shocking to me when I read back through the early blog postings to just how much my poor child had to endure. I lived it, right there in the midst of it and I still find it astounding. There were lots of tears shed today (most of them not actually mine!) so I think that it was a success! :)</span><br />
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<span style="font-family: Georgia; font-size: large;">Part of what I missed yesterday with not being here was that our wonderful Dr.B came and swapped out B's g-tube for us. B's tube has been leaking since this admission (which it usually does with being sick) but we couldn't find a reason for it. We LOVE our AMT mini one (that I specially ordered through the US because it's not sold in Canada) but I was willing to go back to the Mic-key and give it a shot (the thought was that the internal balloon was maybe misshapen in the old one). There is no real reason to why the Mic-key is working and the AMT is not but we've no longer got leakage around the stoma which is great news. </span><br />
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<span style="font-family: Georgia; font-size: large;"><em>For those of you not too familiar with g-tubes, the 'stoma' is the tract that the tube sits in (it is the tube from the skin into the stomach). If there is leakage out the stoma then the child has stomach acid and food coming back out and it can break down the skin quickly forming sore spots.</em></span><br />
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<span style="font-family: Georgia; font-size: large;">The Residents weren't too happy with me that I didn't want them to start using the new tube yesterday, that I wanted to give his stoma one more day of rest (tube removal and insertion is still painful after two years). I held my ground though (not like I wouldn't have) and we started running Pedialyte today and so far so good. He's now on a continuous flow of Pedialyte and if he's still not leaking he'll be back on his regular formula by morning. It will take another few days to work back up to his 'normal' feedings but we're on the right path.</span><br />
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<span style="font-family: Georgia; font-size: large;">Between weaning the oxygen and (hopefully) starting feeds tomorrow we're (me) feeling good that we might only need to be in another few days. I'm happy to take his feeds slow but am also ready to go home away from all the other 'germy germs' here.</span><br />
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<span style="font-family: Georgia; font-size: large;">Now to just start again with getting his weight back up...</span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our (Unit 2) Home To Yours...</em></strong></span><br />
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<br />Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-59028914158179647512014-03-18T22:21:00.000-06:002014-03-19T00:21:17.299-06:00A Lovely Rotten Day<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">It was a good day for Mr.B, not so much his Momma! </span><br />
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<span style="font-family: Georgia; font-size: large;">My day started out by stepping in cat poop (lovely) and it just got better from there! Needless to say my van is now in the shop and the cement barrier won, I did not. Gotta <u>love</u> (not) heavy spring snowfalls that leave amazing ice rinks!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5fYdqeSg7scGbqTX2a89PcY6tEMLm2XkJu3RFMWdvIkE4ttfkWTf5AsYB8yk9T9OeWCohkAc5k_tl-j3d3-jc-tgbwi5047ecds0eJzVifYRwuzYgQBv4__khhQanJDCRXRltR7y_TJ0/s1600/1382804_10153911612405258_1917357360_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5fYdqeSg7scGbqTX2a89PcY6tEMLm2XkJu3RFMWdvIkE4ttfkWTf5AsYB8yk9T9OeWCohkAc5k_tl-j3d3-jc-tgbwi5047ecds0eJzVifYRwuzYgQBv4__khhQanJDCRXRltR7y_TJ0/s1600/1382804_10153911612405258_1917357360_n.jpg" height="400" width="300" /></a><span style="font-family: Georgia; font-size: large;">That being said B had a good day and that is what matters. He's been taken down to 1.5 litres on his oxygen this evening with success so far (we'll see when he falls asleep). His energy level is still increasing and he's feeling in a pretty good mood for the most part (he is 2 after all!).</span><br />
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<span style="font-family: Georgia; font-size: large;">The major issue that we're still having (since this admission) is that his g-tube is leaking. It started out leaking with his feeds but those have been stopped for days now (due to sore tummy with his bugs) and now it's leaking all the time just with his regular stomach fluids (nothing going into the tube). It is very hard to know what the 'issue' is because from the outside it looks great. He is crunching over in pain as soon as something does go into it though and he is in an upright position.</span><br />
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<span style="font-family: Georgia; font-size: large;">Best case scenario is that is the device is faulty (balloon is warped maybe?) and worst case scenario is another fistula has formed or is forming. I did feel a WHOLE lot better after seeing Dr.B (surgeon) today and talking to her about it. She is going to change out his device tomorrow to one similar and see if there is a difference. We'll also do a contrast study (dye in the tube) to see if we can see any 'issues'.</span><br />
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<span style="font-family: Georgia; font-size: large;">It was a disappointing day in the sense that we had to miss out on our seating appointment for his wheel chair fitting. He's got this awesome, very expensive wheel chair downstairs and we can't have it until he gets fitted for it. They said no to having him done today something about him having three viruses...I <u>guess</u> that makes sense!</span><br />
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<span style="font-family: Georgia; font-size: large;">The nice thing is though? I'm sitting here in the dark, listening to our friend (and amazing pianist/composer) Danny Wright's lullaby cd and listening to him play quietly in his crib. I'm relaxed and happy whenever this little bum is near (and he's not stressing me out!). It is always a good way to end a rotten-ish day.</span><br />
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<span style="font-family: Georgia; font-size: large;">A huge thank you for Kelly for rescuing me, the damsel in distress this morning (after my 9 yr old told her Mom had crashed the car). To Sumyu and Rachel for making me the most wonderful hospital snacks that fit with my eating routine (gotta get fit by 40 after all) and for Rachel as well for taking and feeding my big monsters yesterday (again!). The photos are also compliments of Justine! :)</span><br />
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<span style="font-family: Georgia; font-size: large;">At the end of the day, even a rotten one, we are blessed.</span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home (Unit 2) To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-49024333268820773582014-03-17T23:10:00.003-06:002014-03-18T00:06:20.539-06:00More Sun Then Rain<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Somebody has found his sillies again...any guesses who? </span><br />
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<span style="font-family: Georgia; font-size: large;">B's little body is still very much exhausted but he's finding little bursts of energy which are encouraging. He's also gotten his 'flirt' back on with all the 'girlfriends' so life isn't too rough.</span><br />
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<span style="font-family: Georgia; font-size: large;">His lungs are still audibly wheezy and such but the RT said that internally they are certainly sounding better. They weaned his oxygen down to 2 litres today without any incidence (and literally as I'm typing this he has his first desat to 85 while sleeping!!!).</span><br />
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<span style="font-family: Georgia; font-size: large;">They've upped his TPN amount and lowered his overall IV fluids to get him more nutrition. I wasn't here today when the g-tube Nurse came by but they suggested using meplex around his stoma to stop the leakage but when I got here tonight his sleeper was soaked and the meplex was hanging off (doesn't do well when wet). So the stoma is still leaking a good deal even though he's only getting the odd med/flush through it. I'm not too sure why at this point. The balloon seems intact and even had more fill in it then normal. I'm curious if something is going on internally, some breakdown on the inside maybe. I'm hoping surgery will be by tomorrow so that I can show them and pick their brains. We can't get B back onto his g-tube feeds until it is resolved (or at least found a reason). TPN is great in the meantime but it is only a short term solution when your are running it through a PIV.</span><br />
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<span style="font-family: Georgia; font-size: large;">It's nice to see our boy coming back again, even though he's sounding rough. He is pulling himself up on his knees and certainly behaving like a 2 yr old when he's annoyed! I did have to tell him he's not allowed to throw the projectiles (toys, syringes, etc) at the student nurses yet as they're not paid!</span><br />
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<span style="font-family: Georgia; font-size: large;">A large thank you to my friend Peter who came by to check on Mr.B and brought his Kalimba with him for B to enjoy. B loves music so much and it nice to see him laying there enjoying Pete's playing.</span><br />
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</span><span style="font-family: Georgia; font-size: large;">No news from Cardiology today either, but that is a good thing it means they are not concerned. They have pulled back a bit on the steroids that they are administering and it has seemingly made a difference. His heart rate is still low but not scary low like it was yesterday.</span><br />
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<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">Slowly but surely our Bug is working on beating his bugs! The crummy part is that we've got a seating clinic appointment tomorrow for B's new wheelchair (yay!!!) but they won't let us go down to it (something about having three viruses and being contagious...). I'm really hoping that they can come up and at least do the initial fit for us! So exciting!</span><br />
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<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">Hoping that tomorrow brings more sunshine as much as I like dancing in the rain, this Momma's tired out.</span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home (Unit 2) To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-7646371199804373642014-03-16T23:46:00.001-06:002014-03-17T10:42:47.359-06:00Out of the Hole and Through the Dark Forest<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">I literally was on my way out the door last night to get a few hours sleep when I noticed B's heart rate (arrhythmia) was 'odd'. I called in his Nurse and she watched the monitor, saw what I saw and then checked his heart with the stethoscope and heard what I heard.</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">My heart was in my throat, what now?? It wasn't happening often, just every once in awhile and I knew both the night Nurse and the Charge Nurse would watch it closely so I came home feeling so ill. I was so far past exhausted and so sick with worry that I knew if I didn't at least lay down I was going to be useless today.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I may have called the hospital once or twice from home but I did come home and laid in a quiet bed for a few consecutive hours. I told my husband that I hadn't heard him leave this morning and he laughed saying that we'd had a conversation...oops. I asked what about and he said that I was wondering where I was...yup, sleep deprivation is not a good thing.</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">It was a rough start to the day (lots of tired Momma tears) and I spent the good part of the morning/afternoon watching B's monitor as it repeatedly beeped off 'irregular heartrate'. As the day progress so did the frequency of the irregularities. It got to the point where his heart rate was 'normal' only a fraction of the time it was 'irregular'. His rates were jumping from 120's and down to the 80's and back up again. When he started sitting in the 60's I got my annoyed Momma pants on and stomped my foot a bit. No one could give me an answer to what we were looking at until we had an ECG done and no one could give me and ECG because the ward was so busy.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I was trying to be so patient as I knew that the Residents were busy but when his heart rate wasn't coming up from the 60's or 70's I was starting to really get worried (he usually sits around 120 when he's awake). His Nurse was trying really hard to get the ECG done and tracked down the Resident we needed. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">We got the leads on and she kept them on for over 5 mins trying to get the best reads. She wasn't overly concerned but I was still very concerned, this is a <u>very</u> ill child with two Congential Heart Defects that has been on a tonne of drugs over the past few days. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">At the end of the ECG Dr.V actually poked her head in the room since she'd seen B was still admitted and we'd not seen her since Emerge. All it took was a 5 min conversation with her and my stress decreased dramatically.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_OIFw3LGe_udr2po-v3SqIAA4up1tuNviewkioEhmso4Fom3mUgfZT7SwIq2Cd8n2By2KG_hnPqsmW46WryO_io0-Sm5NwxSB8UJ4fCE462hCqImZqq9NUvidmgDK4wr2R2Kabc8OcTc/s1600/SAM_2292.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_OIFw3LGe_udr2po-v3SqIAA4up1tuNviewkioEhmso4Fom3mUgfZT7SwIq2Cd8n2By2KG_hnPqsmW46WryO_io0-Sm5NwxSB8UJ4fCE462hCqImZqq9NUvidmgDK4wr2R2Kabc8OcTc/s1600/SAM_2292.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It's hard to get a heart rate when it's in your hands little boy</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Long story short, B's 'waves and bumps' are where the need to be on the ECG but his heart rate is just in a Brachycardia state (very low heart rate). That's the extreme opposite of what we are used to, B's usually at risk for Tachycardia for pete's sake!! They believe the cause is from all of the hard core steroids the are administering him right now to keep his lung function up. We've gone down to doing 5 puffs of ventolin every 2 hours now (instead of hourly) and with that difference it isn't yanking his heart rate up to balance out the steroids taking it down...something like that.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Cardiology with review it in the morning and we'll go from there. In the meantime he's being watched.</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">The other main issue that we're having is that B's been unable to feed for over three days now. We started running Pedialyte yesterday with no success and to even put meds and a flush through his g-tube is causing him discomfort. It was suggested today that we put an NJ tube in (through the nose into the intestines) to which the Dr got a very loud 'nope' from me. We've been there, and done that. Not to mention the kid is maxed out on oxygen and yet we want to plug up one of his nostrils why?? They decided that we'd revisit it tomorrow and I asked for TPN to be started since we've got a decent IV. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">It took my 5 min conversation with Dr.V to get that TPN order in and started! Yay! Within 2 hours, I kid you not, we had our B back. He's exhausted and his lungs are still very bad but his personality was back...big Momma tears.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">As I told my mother-in-law tonight, we are not out of the woods by any means but at least we're out of this huge hole for now and can start to move forward (I hope).</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5W058QpM1ghWIifuo7sTVerI5PSuk-gjxH9qIhoo3JNEnEzOPttyrkdVzpFuUqn75gbPufqkJ3P9uuCGCbpztZE0AOzvlicM9aMt_xytfSMnLM0b85hP6sjnuXj0SuqVvZWKaWUROchM/s1600/SAM_2302.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5W058QpM1ghWIifuo7sTVerI5PSuk-gjxH9qIhoo3JNEnEzOPttyrkdVzpFuUqn75gbPufqkJ3P9uuCGCbpztZE0AOzvlicM9aMt_xytfSMnLM0b85hP6sjnuXj0SuqVvZWKaWUROchM/s1600/SAM_2302.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rachel watching over our B<br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I am feeling the most relaxed that I've been in a week (which isn't saying much really) but some of that has to do with B being, well B and for the 5 hours that my friend Rachel came and just spent with me, beside me. My children were well tended to today with Kelsey taking them on a grand adventure and for Justine for covering off time at ACH again this morning (on her other day off!).</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Out of the hole and through the dark forest...</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;"><a href="https://www.facebook.com/photo.php?v=760915427267013&set=vb.581141368577754&type=2&theater" target="_blank">Click here to the Facebook Page for the cutest video of our B 'purring'...</a></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Xieocjtd4mWob7568HsSXl2sZ9FkJjcMfdy5cubXOpY-aI3WNfVho6YXl_0WN56r3MjWIsFsCh38IAvDEBJE6lJWM2K6TSV-n-dT8I9PVKzgRqSRA_74qEWqj_gzeiWMr4YM_fo_F6g/s1600/SAM_2306.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Xieocjtd4mWob7568HsSXl2sZ9FkJjcMfdy5cubXOpY-aI3WNfVho6YXl_0WN56r3MjWIsFsCh38IAvDEBJE6lJWM2K6TSV-n-dT8I9PVKzgRqSRA_74qEWqj_gzeiWMr4YM_fo_F6g/s1600/SAM_2306.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yay for TPN!</td></tr>
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<span style="font-family: Georgia; font-size: large;"><span style="font-size: x-large;"><strong><em>From Our Home (Unit 2) To Yours...</em></strong></span> </span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-49438642981330721702014-03-15T22:47:00.002-06:002014-03-17T10:39:06.786-06:00Waiting For the Shoe to Drop<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"><span id="goog_1360410284"></span><span id="goog_1360410285"><br /></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">I hate sitting here waiting for the other shoe to drop...I feel like we are sitting on the edge of our seats here. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJF0W3PeYluQANcvpEr_Zi9Rw0zdDDtwdRTRJNpgGResZRHU5lnPrW8VvZwLl4W8-Mhl8BQzw9SBtY8VNPde3_5EHUAxVjSHKH264gF5TDvARjchslejcQxYv_g_hkMSerxDlLHOnIpBQ/s1600/SAM_2282.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJF0W3PeYluQANcvpEr_Zi9Rw0zdDDtwdRTRJNpgGResZRHU5lnPrW8VvZwLl4W8-Mhl8BQzw9SBtY8VNPde3_5EHUAxVjSHKH264gF5TDvARjchslejcQxYv_g_hkMSerxDlLHOnIpBQ/s1600/SAM_2282.JPG" height="400" width="271" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I didn't quite realize how much stress can come across in a photo</td></tr>
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<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">B had a decent morning but again this afternoon he got very lethargic and (mostly) unresponsive for over 5 hours. Everyone keeps reminding me that he's tired and I get that, he's exhausted naturally but I can't stop my 'spidey senses' that there is something more in the picture here. He doesn't want to be held, he doesn't want his Momma and he was completely unresponsive to his big brothers when they came into his room. Maybe I'm wrong, I'd certainly be happy to be wrong.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">I finally asked for a CBC (blood work) to be done and a blood gas since he's so tired and having desats again. Blood work isn't any worse nor is his blood gas, which is great but now his blood pressure is up tonight.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">I just changed his bum (I've got cold hands), his Nurse did his full assessment and I gave him his 5 puffs of ventolin all with no real response from him (cried when I started the ventolin because it is on his face).</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">They did start a run of Pedialyte in his g-tube this afternoon (only 10mls an hour) but he was having none of it. He was pulling at his g-tube and crying, it just hurts to have anything in his tummy. We also went from straight drainage (g-tube open to drain) to having food put in with no time in between to clamp him. Kinda missed that step of clamping off the tube to see if he can even handle his own secretions in his tummy (didn't even cross my mind). So food (Pedialyte) is stopped for now and I've asked about TPN (IV nutrition). I'm not keen on TPN, it's not great but he needs something. My poor boy has been without food for three days and is rapidly losing weight (again).</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">He's still working very hard to breathe (indrawing and nasal flaring) so he's burning up calories there too. It's not been decided if the ventolin is really making that much of a difference so we've pushed it back to every 2 hours (as opposed to hourly) so we'll see through the night if it makes a difference. I'm not expecting a dramatic improvement but I get very concerned when B has no personality aside from whining in discomfort or just sleeping through everything.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">None of this helps as well when my own gas tank is empty. I'm trying to get rest but when B's ill my brain doesn't shut down for very long to let me truly 'rest' (not to mention he's checked every 1/2hr when I'm at the hospital). I'm trying to take care of myself through this, I'm trying to ask for help (thank you so much to Justine for working today, for Lorna for the goodies and feeding my children and Sumyu for the enchiladas in my oven).</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">Please keep our sweet boy in your thoughts. He's such a strong kiddo but even the strongest need to rest at times too. My greatest fear (in this moment at least) is that he'll continue to be pushed (working hard to breathe) on the 3 litres and finally just crash because his little body is so tired. I'm trying to be positive, think positively but I'm know I'm certainly stressed and exhausted.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">I hate when I get like this because poor Rylan gets the brunt of my Mommy grumpies. He's just being a 7 yr old boy but his Momma has no patience for it (which is not good for Momma guilt when reflecting on another long day). So please too keep our sweet Rylie in your thoughts he just trying to be a kid even though he's missing his brother.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">Our guardian of a big brother Torin is struggling with not having his Mr.B at home. Torin is fiercely protective over B and is our Mr.B whisperer. There's been many tears over the past few days so I know that this too is taking a toll on him. Please keep our protector T in your thoughts too, he needs some lifting up.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">Another long sleepless night ahead but there is hope in my heart that tomorrow is another day, a better day.</span><br />
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</span><span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our (Exhausted) Home (Unit 2) To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-49722267005459408492014-03-15T11:22:00.002-06:002014-03-17T10:35:43.253-06:00RSV, Adenovirus, AND EnteroRhino...SPEECHLESS<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Those of you that have followed us for some time (some since the beginning), thank you and those of you that are just joining us, thank you. What those of you that have been following for awhile will know and what those of you that are new will find out is that this child is a Boy Wonder in every sense of the word. At <u>some</u> point I hope he'll realize he doesn't need to challenge Dr's around every corner he turns.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbnZM24F8w1yEbIfjtQKd8rf6OO7Bm4G2K6VD6GBG6mMFpzEZfMbs0bz9cEGiWH8F1NxWU-DjpUnESgeB01q4DX6ujYYoeATsh9yXwuvXYfnk1Zy70UMHMb1gzM6pQaPl5zn04cXl05cE/s1600/SAM_2160.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbnZM24F8w1yEbIfjtQKd8rf6OO7Bm4G2K6VD6GBG6mMFpzEZfMbs0bz9cEGiWH8F1NxWU-DjpUnESgeB01q4DX6ujYYoeATsh9yXwuvXYfnk1Zy70UMHMb1gzM6pQaPl5zn04cXl05cE/s1600/SAM_2160.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Emerge entertainment</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">We got Mr.B's viral panel back late yesterday afternoon. One would think (as I thought) that I would feel relief knowing what we are dealing with...(you might want to sit for this or be away from small children because you might let a bad word out!)...</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Mr.B tested positive for: </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia;"><span style="font-family: Times New Roman;"><span style="font-family: Georgia, "Times New Roman", serif;"><a href="http://kidshealth.org/parent/infections/lung/rsv.html" target="_blank"><strong><span style="color: black; font-size: x-large;">Respiratory Syncytial Virus</span></strong></a><span style="font-size: x-large;"><strong> <u>(RSV</u></strong>)</span></span></span></span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">RSV (respiratory syncytial virus) is a virus that infects the lungs and airways (breathing passages). RSV can affect anyone of any age, but it's most common in infants and young children. In fact, it's so common that almost all children have been infected with RSV by the age of three.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"> RSV is usually a mild disease that goes away on its own. In very young children RSV can sometimes lead to serious infections like </span><a href="http://www.lung.ca/diseases-maladies/a-z/pneumonia-pneumonie/index_e.php"><span style="font-family: Georgia, "Times New Roman", serif;">pneumonia</span></a><span style="font-family: Georgia, "Times New Roman", serif;"> or bronchiolitis (a swelling of the bronchioles — the smallest air passages of the lungs).</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"> </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"><u>Warning signs of a serious RSV infection</u> </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"> These signs may mean your child has a more serious case of RSV. Get emergency help right away if your child has: </span><br />
<ul>
<li><span style="font-family: Georgia, "Times New Roman", serif;">trouble breathing <strong>(check)</strong></span></li>
<li><span style="font-family: Georgia, "Times New Roman", serif;">fast, rapid breathing <strong>(check)</strong></span></li>
<li><span style="font-family: Georgia, "Times New Roman", serif;">wheezing <strong>(check)</strong></span></li>
<li><span style="font-family: Georgia, "Times New Roman", serif;">deeper and more frequent coughing <strong>(check)</strong></span></li>
<li><span style="font-family: Georgia, "Times New Roman", serif;">blue lips or fingernails <strong>(check)</strong></span></li>
<li><span style="font-family: Georgia, "Times New Roman", serif;">dehydration <strong>(check)</strong></span></li>
<li><span style="font-family: Georgia, "Times New Roman", serif;">difficulty breast feeding or bottle-feeding<strong> (check, g-tube feeding)</strong></span></li>
</ul>
<span style="font-family: Georgia, "Times New Roman", serif;">Most children with RSV who are sick enough to go to the hospital are either very young (infants) or <em><strong>have an underlying health condition, like heart or lung disease</strong>.</em></span><br />
<em></em><br />
<em><span style="font-family: Georgia, "Times New Roman", serif; font-size: x-large;"><strong></strong></span></em><br />
<em><span style="font-family: Georgia, "Times New Roman", serif; font-size: x-large;"><strong>AND...</strong></span></em><br />
<strong><em><span style="font-size: x-large;"></span></em></strong><br />
<strong><u><span style="background-color: white; color: black; font-family: Georgia, "Times New Roman", serif; font-size: x-large;"><a href="http://kidshealth.org/parent/infections/lung/adenovirus.html" target="_blank">Adenovirus:</a></span></u></strong><br />
<span style="font-family: Georgia; font-size: x-large;"><span style="font-family: Times New Roman; font-size: small;"></span></span><br />
<span style="font-size: x-large;"><span style="font-family: Georgia, "Times New Roman", serif; font-size: small;">Adenoviruses are a group of viruses that can infect the membranes (tissue linings) of the respiratory tract, eyes, intestines, and urinary tract. They account for about 10% of acute respiratory infections in kids and are a frequent cause of </span><a href="http://kidshealth.org/parent/medical/digestive/diarrhea.html"><span style="color: black; font-family: Georgia, "Times New Roman", serif; font-size: small;">diarrhea</span></a><span style="font-family: Georgia, "Times New Roman", serif; font-size: small;">.</span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"> </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">Depending on which part of the body is affected, the signs and symptoms of adenoviral infections vary:</span><br />
<strong></strong><span style="font-family: Georgia, "Times New Roman", serif;"> </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"><strong>Febrile respiratory disease (check)</strong>, an infection with fever of the respiratory tract, is the most common result of adenoviral infection in kids. .</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">Adenovirus often affects the lower respiratory tract as well <strong>(check)</strong>, causing </span><a href="http://kidshealth.org/parent/infections/bacterial_viral/bronchiolitis.html"><span style="font-family: Georgia, "Times New Roman", serif;">bronchiolitis</span></a><span style="font-family: Georgia, "Times New Roman", serif;">, </span><a href="http://kidshealth.org/parent/infections/bacterial_viral/croup.html"><span style="font-family: Georgia, "Times New Roman", serif;">croup</span></a><span style="font-family: Georgia, "Times New Roman", serif;">, or viral pneumonia, which is less common but can cause serious illness in infants. Adenovirus can also produce a dry, harsh cough that can resemble </span><a href="http://kidshealth.org/parent/infections/lung/whooping_cough.html"><span style="font-family: Georgia, "Times New Roman", serif;">whooping cough (pertussis)</span></a><span style="font-family: Georgia, "Times New Roman", serif;"> <strong>(check)</strong>.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"><strong>Gastroenteritis (check)</strong> is an inflammation of the stomach and the small and large intestines. Symptoms include watery diarrhea, vomiting, headache, fever, and abdominal cramps.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"><strong>Genitourinary infections (check, B's lack of urine output):</strong> <strong><a href="http://kidshealth.org/parent/infections/bacterial_viral/urinary.html">Urinary tract infections</a></strong> can cause frequent urination, burning, pain, and blood in the urine. Adenoviruses are also known to cause a condition called <strong>hemorrhagic cystitis</strong>, which is characterized by blood in the urine.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">AND MORE...</span><br />
<br />
<strong><em><span style="font-family: Georgia, "Times New Roman", serif; font-size: x-large;"></span></em></strong><br />
<strong><em><span style="font-family: Georgia, "Times New Roman", serif; font-size: x-large;">AND...</span></em></strong><br />
<strong><em><span style="font-family: Georgia; font-size: x-large;"></span></em></strong><br />
<strong><span style="color: black; font-family: Georgia; font-size: x-large;"><u><a href="http://www.healthychildren.org/English/health-issues/conditions/ear-nose-throat/pages/Rhinovirus-Infections.aspx" target="_blank">Entero Rhinovirus:</a></u></span></strong><br />
<span style="font-family: Georgia;"><em>(this is the lovely virus that ended us up in PICU a year and a bit ago on a ventilator for 10 days, with another three weeks in hospital)</em></span><br />
<span style="font-family: Times New Roman;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">More than any other illness, rhinoviruses <i>(rhin </i>means “nose”) are
associated with the common cold. Rhinoviruses may also cause some sore throats,
ear infections, sinus infections, and to a lesser degree, pneumonia and
bronchiolitis (<strong>infection of the small breathing passages of the lungs</strong>).</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"> </span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">Children may also develop symptoms such as</span></div>
<ul><span style="font-family: Georgia, "Times New Roman", serif;">
</span>
<li><div align="left">
<span style="font-family: Georgia, "Times New Roman", serif;">Sneezing <strong>(check)</strong></span></div>
</li>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span>
<li><div align="left">
<span style="font-family: Georgia, "Times New Roman", serif;">A mild fever (101°F–102°F or 38.3°C–38.9°C) <strong>(check)</strong></span></div>
</li>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span>
<li><div align="left">
<span style="font-family: Georgia, "Times New Roman", serif;">Headaches <strong>(probably, check)</strong></span></div>
</li>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span>
<li><div align="left">
<span style="font-family: Georgia, "Times New Roman", serif;">Sore throat <strong>(check)</strong></span></div>
</li>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span>
<li><div align="left">
<span style="font-family: Georgia, "Times New Roman", serif;">Cough <strong>(check)</strong></span></div>
</li>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span>
<li><div align="left">
<span style="font-family: Georgia, "Times New Roman", serif;">Muscle aches <strong>(check)</strong></span></div>
</li>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span>
<li><div align="left">
<span style="font-family: Georgia, "Times New Roman", serif;">A decrease in appetite <strong>(check)</strong></span></div>
</li>
</ul>
<div align="left">
<strong></strong> </div>
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<strong><span style="font-size: x-large;"><span style="font-family: Georgia, "Times New Roman", serif;">How? How? How does ONE child (Mr. Talented B) end up with <u>ALL THREE at ONCE</u>???</span></span></strong><div class="separator" style="clear: both; text-align: center;">
<strong><span style="font-size: x-large;"><span style="font-family: Georgia, "Times New Roman", serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqDRLdj2HwUv4VjuTMjZQAVbIPvZI0ppotlCJ-DGs9oLzBxkKymbhxUjx2XAK86jiXjxlPnmNqQyh9Rzm4SWATU2938Mpz5qc4Uh8TsLo_a_LeimD3NboUGHzFxcCm1MvQ7o8HOz-WEjI/s1600/SAM_2165.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqDRLdj2HwUv4VjuTMjZQAVbIPvZI0ppotlCJ-DGs9oLzBxkKymbhxUjx2XAK86jiXjxlPnmNqQyh9Rzm4SWATU2938Mpz5qc4Uh8TsLo_a_LeimD3NboUGHzFxcCm1MvQ7o8HOz-WEjI/s1600/SAM_2165.JPG" height="300" width="400" /></a></span></span></strong></div>
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<strong><span style="font-size: x-large;"></span></strong> </div>
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">We've always known that B does things in his own way, on his own time but man, this one has stumped me!</span> <span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Having ONE of these would stress me out, having all three? Off the charts.</span></div>
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<span style="font-family: Georgia; font-size: large;"></span> </div>
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<span style="font-family: Georgia; font-size: large;">What does this mean? Well it means that B is one sick kiddo and that we've got a very long haul (is the assumption) back to wellness ahead of us. His body is obviously very tired and very run down right now.</span></div>
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<span style="font-family: Georgia; font-size: large;"></span> </div>
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<span style="font-family: Georgia; font-size: large;">The AMAZING news? He's doing better in terms of moving some air in his lungs. He's able to maintain his sats for the most part on the three litres of oxygen and he's finally responding to the non-stop (every hour) ventolin boluses. He still is really only using one lung for most of the work (due to the illnesses clogging his lungs) but he's doing it.</span></div>
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<span style="font-family: Georgia; font-size: large;"></span> </div>
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<span style="font-family: Georgia; font-size: large;">He had another long night in terms of lack of sleep but he didn't need any other intervention (like c-pap or more). The STEP (ICU) Team was happy with what they saw at 1am (and again at 6am). They are even at the point that they are considering discharging him <u>(from ICU care only) </u>this afternoon.</span></div>
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<span style="font-family: Georgia; font-size: large;"></span> </div>
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<span style="font-family: Georgia; font-size: large;">We're not out of the woods by any stretch, it is very possible for this to turn again on us on a dime, but for now, there is hope in my heart.</span></div>
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<span style="font-family: Georgia; font-size: large;"></span> </div>
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<span style="font-family: Georgia; font-size: large;">The fact that B is fighting all three of these and (seemingly) winning? Well it makes the tears fall freely down my face. Any one of these viruses could set him back <u>months</u> and to be fighting all three back with a vengeance? This child astounds me.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP87mgCBSSjwJqJRVuRuzrck2ELS5BRA2YEN6bvJoxFua6GL7-hI24QNLeIbTM1xxEa6P9MORmoqxjL5p_Qg_HEUJ5M_mDHH4h72rf4ICYIp0Hz53v7OeO3Mlsamza6zs_QLx8EX3ObFA/s1600/SAM_2242.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP87mgCBSSjwJqJRVuRuzrck2ELS5BRA2YEN6bvJoxFua6GL7-hI24QNLeIbTM1xxEa6P9MORmoqxjL5p_Qg_HEUJ5M_mDHH4h72rf4ICYIp0Hz53v7OeO3Mlsamza6zs_QLx8EX3ObFA/s1600/SAM_2242.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is about the right energy level...</td></tr>
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<span style="font-family: Georgia; font-size: large;">Thank you everyone for your continued support and encouragement. Thank you to those of you that have gone over and above to care for us (again) through another one of our hurdles <strong>(Laine K, Kristina Mc, June (Kelsey) O, Lorna Z, Ashley (and Rene) R. and Tara (and Lorraine) A</strong>. I can't tell you (again) how blessed we are for those of you that offer us help in our times of need, so many of you go over and above. Thank you, thank you, thank you.</span></div>
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our (Stressed Out Unit 2/ICU Bed) Home To Yours...</em></strong></span></div>
<br />Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-34731200092604730122014-03-14T18:40:00.003-06:002014-03-17T10:33:53.791-06:00My Sweet Sick Boy<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXYJkPR5hDU0ARfzr_8eJEHAM-x3oTv5NTrGi7rjWChWpduHlpPe_SbtkZV4puM8mnz2AHrsqPD5HKSyeDgE6QnpPKvbJlw4L4GwCSjUlqaXuJHLdXD6mkmGJDnAwKUNRLFQj8-0C9i2M/s1600/SAM_2236.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXYJkPR5hDU0ARfzr_8eJEHAM-x3oTv5NTrGi7rjWChWpduHlpPe_SbtkZV4puM8mnz2AHrsqPD5HKSyeDgE6QnpPKvbJlw4L4GwCSjUlqaXuJHLdXD6mkmGJDnAwKUNRLFQj8-0C9i2M/s1600/SAM_2236.JPG" height="300" width="400" /></a></div>
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">My Dear Mr.B,</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">I know it's been a month since I last left you a message to your future self on here and it's not for a lack of happenings, just more for a lack of time (I'll write an update post and pictures of our adventures in the past month I'm sure).</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">What sucks is that I have time now because you are laying beside me in your hospital bed, struggling to breathe. It's been a long time little Love since your Momma has been this worried about you. I don't know how it is that after more than two years you can still catch us all so off guard!</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">I brought you in on Monday to Emerge because you were visibly struggling and working harder to breathe. I dropped the big boys off at school and brought you into Emerge. <em>*You know you are a parent of a complex care kid when you do other things that need to get done in life first before coming into Emergency* </em>It was pretty clear pretty quick that you needed to be admitted but what wasn't clear was where to put you because (once again) the hospital was 'full'. We did get our expected diagnosis of pneumonia and we did our 12 hour stint in order to get a bed up on our Unit 2.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">Aside from not peeing for such long stretch of time and working a bit harder to breathe, you actually didn't look/sound that bad. They did start you on IV antibiotics (5 IV's later in Emerge) and Tamaflu to cover all of your bases.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">We cruised through Tuesday and Wednesday thinking that the illness would 'peak' and pass. We even had a good day yesterday and you actually got enough of a burst of energy to get up and play on your knees in the crib for short bursts. I made the mistake (?) of even announcing that we seemingly hit out peak and you were rounding the corner (to health).</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">We certainly rounded a corner last night but it was not one to health at all, the direct opposite. As I said my little duck, it's been a long time since I've been this worried about you. You got really sick really quite fast (over a few hours) last night and had your night team jumping all night. I knew by 11pm last night that we were certainly in troubled waters and that we'd most likely be headed downstairs to the PICU.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">The ICU team did watch you as well overnight but they were confident that Unit 2 was still an okay place to be (even though you are maxed out on your oxygen here). We got kind of mixed reviews on what your chest x ray showed. PICU thought it was more a showing of very nasty pneumonia but the Unit thought that maybe we were looking at a <a href="http://www.lung.ca/diseases-maladies/a-z/pneumothorax-pneumothorax/index_e.php" target="_blank">pneumothorax.</a> Neither were particularly promising but we couldn't be sure until Radiology had a look at your film. I knew how very ill you felt because you've not really fought any of your xrays or tests (and blood gases are awful!).</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">You are getting round the clock ventolin (5 puffs every hour), IV steroids now and a new, bigger antibiotic. Through all of this there has really been no significant change. We do know now it is an awful, vicious pneumonia but we still don't know the type. It's frustrating to me that they did all of the bloodwork and such on Monday and we still don't have our 'bacteria' or 'virus' cause. I don't know why I feel like I need a name, I just do. It won't change the protocol but at least I can give this awfulness a name and can direct some energy towards that.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">It's been a very long time since I've seen you this sick, this pale and this unresponsive at times. What I need you to do now Sweet Boy is to tell this bug who is in charge and to take a hike.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">You are still sitting on the cusp of ICU and still very much in the scary zone. My biggest fear is that your little body will just get simply too tired to keep going and you'll end up intubated. I'd much rather put you (torture) on C-pap or even a ventilator then wait too long and have to intubate you because your little body gets too tired.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">All we can hope is that time is on our side, that you'll fight this bug with all that Superhero B strength. You still amaze me while you are so ill that you can still do your nose scrunchers and funny faces for your favourite docs.</span><br />
<span style="font-family: Georgia; font-size: large;"><br /></span><br />
<span style="font-family: Georgia; font-size: large;">Love your biggest fan, your Momma </span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home (Unit 2/ICU) To Yours...</em></strong></span></div>
Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-64718283778164580832014-02-11T20:31:00.001-07:002014-02-11T20:31:04.389-07:00Doing Our Part...<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Another three week gap, I know, I know! My phone is ringing and I've had people stopping to see if we are okay. We <u>are</u> okay (thank you for asking) it is just something about this time of year that I find it hard to find the time to sit and write. On the good news side of things, you're about to get a photo bomb here! :)</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8YPNnXbu3N5XRP0BrvrTA76YM8fSCcK3MCq6p1FHYjjTp8JkI_synKFiF36T98tE0lzCv58Luck77hguElccBDJtX01jENvSr2svRzuuLrlDU6CWhBOsswJIKd69_XifCfTHj6AoYxps/s1600/SAM_1622.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8YPNnXbu3N5XRP0BrvrTA76YM8fSCcK3MCq6p1FHYjjTp8JkI_synKFiF36T98tE0lzCv58Luck77hguElccBDJtX01jENvSr2svRzuuLrlDU6CWhBOsswJIKd69_XifCfTHj6AoYxps/s1600/SAM_1622.JPG" height="323" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some Araya lovin'!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLecxPFDPYg2vy1diCx1qQEFQ-svXEq_WTfw7GqlVE2PKrXOvbZOvShUhUpFjKTcCGVmCgGjCH8XOI_YoXVb30y3PHtNgP5UIA_tUgDzu1eF4Kr_ooldl4m5M-XdRLvn1qk1rC_J_Hwy4/s1600/SAM_1625.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLecxPFDPYg2vy1diCx1qQEFQ-svXEq_WTfw7GqlVE2PKrXOvbZOvShUhUpFjKTcCGVmCgGjCH8XOI_YoXVb30y3PHtNgP5UIA_tUgDzu1eF4Kr_ooldl4m5M-XdRLvn1qk1rC_J_Hwy4/s1600/SAM_1625.JPG" height="400" width="368" /></a></div>
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<span style="font-family: Georgia; font-size: large;">I'm also embarking on a brand new adventure, I'm <u>trying</u> to take care of myself! It's a bit of a shock to the system, but hey, at least I'm trying!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigNmtuzLJwu34aRi0pbWlVhS5ooVuk_NIvCXPULmsyPd4RMSxkfoRyia6mCC80FC9GwYhcvNZlZFRZF5KDSaJFhZa9QB_d4jA9PQ59iyT-mBMXJhTiQF0VkCij2J704-EzMpKE5Z_CVoE/s1600/20140210_123057.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigNmtuzLJwu34aRi0pbWlVhS5ooVuk_NIvCXPULmsyPd4RMSxkfoRyia6mCC80FC9GwYhcvNZlZFRZF5KDSaJFhZa9QB_d4jA9PQ59iyT-mBMXJhTiQF0VkCij2J704-EzMpKE5Z_CVoE/s1600/20140210_123057.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing some physio, heavy lifting!</td></tr>
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<span style="font-family: Georgia; font-size: large;">We are officially one month free of an admission!!! Yahoo! It feels as though it's been an non-stop, ongoing admission after admission since June. I think we ended up with 10 in all in the last 7 mths which is nuts! We've been just enjoying life at home (although of course we are still at ACH multiple times a week for appointments).</span><br />
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<span style="font-family: Georgia; font-size: large;">The second half of January was big month for us with <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdKerLULXsO-5xP3WKX9b3m23HrEUpf40_hFmkNqomVmZ38H0WiyKQsjvrlBn1Qvyq48n0CbpgN0Wi6N9ov3uOi365V_qTY7Tw91vZoqqZY3UVIfc7dGA8qaZ-wxzSjtrpF-7THZGOL4o/s1600/SAM_1516.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdKerLULXsO-5xP3WKX9b3m23HrEUpf40_hFmkNqomVmZ38H0WiyKQsjvrlBn1Qvyq48n0CbpgN0Wi6N9ov3uOi365V_qTY7Tw91vZoqqZY3UVIfc7dGA8qaZ-wxzSjtrpF-7THZGOL4o/s1600/SAM_1516.JPG" height="320" width="286" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Water Baby!<br />
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appointments and starting new things! Mr.B started water therapy over at the ACH therapy pool (a wee indoor pool for Special Needs kiddos). As we all know, B LOVES the water and he's certainly enjoying the class! He's not at all thrilled with the 'group participation' part of the class but he's happy as a little fish to 'swim' with Justine. He's even got an amazing little froggy kick going on. I can already see a difference after only 4 classes in his strength! It's pretty astounding how doing the water therapy combined with therapies at home how much he's grown in strength. Wait for it...B is now able to STAND for about 10 seconds (while his little legs shake like mad!) while holding onto the edge of his crib. It is so heart wrenching to witness! I even had him 'stand' at the edge of our dining room table tonight for a few seconds and we could see the light bulb go off in his head when he realized he could see what was on the table! Hilarious! And I already thought he was into everything... People keep saying he'll be walking soon, and I love their enthusiasm, but he still has a great deal of strength and balance to build before walking will happen. I have NO doubt in my mind that he will in fact walk but he'll do it on 'B' time.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYO4n8DcwZFKK_M8HVBYWakOkzfvf2ntKdBr8NEUrS7yuQEifoyAfCVgK-tNzVJvpjSimHQkpB-2O4xFYaWL1HBZ5FsLQTpbBrVL3hIa5p2GGarX0np6FDya2gr1BTelygSrdoQfFYhQk/s1600/20140210_152655.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYO4n8DcwZFKK_M8HVBYWakOkzfvf2ntKdBr8NEUrS7yuQEifoyAfCVgK-tNzVJvpjSimHQkpB-2O4xFYaWL1HBZ5FsLQTpbBrVL3hIa5p2GGarX0np6FDya2gr1BTelygSrdoQfFYhQk/s1600/20140210_152655.jpg" height="640" width="456" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm STANDING!!!!! This is HUGE!!!!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX4HD04vKy1KxPbPpzcddRja1b5KqDZ5-f99jyZvdCvgnlVHcryIsz9Ke3wPMoE0yBstZI-NvZm8SbhrryXxL6RMGgwceHQgSx8cl3D6LGcnR_w-XfdJ6EAfUCiP-AsZ35v3SjjUbDGJM/s1600/20140206_115712.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX4HD04vKy1KxPbPpzcddRja1b5KqDZ5-f99jyZvdCvgnlVHcryIsz9Ke3wPMoE0yBstZI-NvZm8SbhrryXxL6RMGgwceHQgSx8cl3D6LGcnR_w-XfdJ6EAfUCiP-AsZ35v3SjjUbDGJM/s1600/20140206_115712.jpg" height="400" width="258" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Crammed between a purse and a feeding tube bag...but I'm sitting in a cart!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZur1amVM2QAudRhSGv_wJFVUq8-yCnqIsYRiaQ5m5Yv517nMxW_RzXWIWT1PcSPkIAOWfL94-ORshNbRCwS4TZIlkquqIU_lnrsPPFDbNnSdAEf7k0BYgvfYRRIbGa2LiFsSe6l4wyDc/s1600/20140211_100336.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZur1amVM2QAudRhSGv_wJFVUq8-yCnqIsYRiaQ5m5Yv517nMxW_RzXWIWT1PcSPkIAOWfL94-ORshNbRCwS4TZIlkquqIU_lnrsPPFDbNnSdAEf7k0BYgvfYRRIbGa2LiFsSe6l4wyDc/s1600/20140211_100336.jpg" height="320" width="292" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big sitter!</td></tr>
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<span style="font-family: Georgia; font-size: large;">The other outstanding news is Mr.B's language is taking off! He is consistently saying 'Hi', 'Mama' and 'Bye-bye'. He's not using thing contextually just yet but hey, he's SPEAKING! When you have a child with an almost paralyzed vocal cord that is now making real words, anything is possible! As with the physical, he's gonna do it all on his own timeline. He is absorbing sign language more and more each and every day he works with Justine and starting to be consistent with some signs as well. I believe SO strongly in the power of teaching <u>all</u> children sign language, it was both Torin and Rylan's first language. Being as T was pretty much non-verbal until he was 4 1/2 it was started out of necessity but with Rylan it was used because we were using it with T and it worked (and they are only 1 1/2 yrs apart in age). The ironic thing however is all of the sign language that I learned with/for the big boys was all around food for the most part! How hard is it to communicate with a two year old what he wants to eat? Sign language took all of that frustration away for us! Now here I am with a boy who is completely g-tube fed and has no interest in food! Thanks universe! Ah well, it is just as good for me as it is for B to learn new signs. Good thing for us Justine is a qualified Sign Language Interpreter!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Working hard in my standing frame!</td></tr>
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<span style="font-family: Georgia; font-size: large;">We did also get into see the Sleep Physician (finally) this month but it was somewhat disappointing. I don't know what I was expecting but I was sincerely hoping for some sort of 'coping' strategies or <u>something</u>. From our two overnight sleep studies (that are done at ACH) we know that he wakes every 45mins to 1hr and that he has mild apnea (yay). The biggest problem is (and has been for over a year now) is that there is no <u>reason</u> for his waking that we can find. I found myself trying really hard to not get defensive and listen to what she had to say but it was hard! He's not a 'typical' kid that doesn't sleep, he is a child that has had to endure severe traumas and never ending pain. I can't let him 'cry it out', he'll not only turn blue but also start to retch (he can't vomit remember) and then I've gone from a crying baby to a child that needs medical intervention. I could go on and on about his sleep habits and lack of any kind of rhyme or reason to it all but it would take all night. We are coping, I do have Justine's help for this exact reason so I can get some sleep during the day when she's here but it's certainly not ideal. Nevertheless I will do as she asked (the sleep Dr) and write down what<strong><em> </em></strong><u>I</u> do each night for three weeks, not B but <u>me</u>.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Gl0-Qo8wwPHvgSvRxau81sQ5QlN__2jxaROre_CSzNghruUR3L_y9kMttd2STi575HfzFsJO6OwqblMvYARFK2LUYhgOuN05roPBgtA-qCTQ0faYI0bnmjgaRvioXN8nHbZ4gga-5-U/s1600/SAM_1578.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Gl0-Qo8wwPHvgSvRxau81sQ5QlN__2jxaROre_CSzNghruUR3L_y9kMttd2STi575HfzFsJO6OwqblMvYARFK2LUYhgOuN05roPBgtA-qCTQ0faYI0bnmjgaRvioXN8nHbZ4gga-5-U/s1600/SAM_1578.JPG" height="400" width="300" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk05zcVGMudKhHMvjcxg-7d0q7ArwjVICB7nfyyTes3KJdLFmM38i2R1cvb8kNDlKaYMm6Gvd8TFuk-yRlq68DDU9yDN8Dosc9lbFTblI9YA8fcfarn3EEABxi0uR_DztPQPAr-pCOpDI/s1600/SAM_1560.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk05zcVGMudKhHMvjcxg-7d0q7ArwjVICB7nfyyTes3KJdLFmM38i2R1cvb8kNDlKaYMm6Gvd8TFuk-yRlq68DDU9yDN8Dosc9lbFTblI9YA8fcfarn3EEABxi0uR_DztPQPAr-pCOpDI/s1600/SAM_1560.JPG" height="400" width="277" /></a></div>
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<span style="font-family: Georgia; font-size: large;">We also saw the Eye Surgeon in January for our surgery follow-up to which we got (dripping with acidic sarcasm) the news that he'd need a second eye surgery. Wow, shocker. I enquired again to why he didn't do the 'other' procedure (that I swear we discussed) instead of this one that he did do but he again reassured (not) me that the other surgery (that he now needs!!!) is only ever a 'Plan B' surgery. SIGH. I am in NO rush to get another eye surgery for him as long as his left eye stays open as much as it does and the vision doesn't start to get affected or the eye gets 'lazy'. So very frustrating. Of all the times I didn't have a second person in the initial consult with me...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsSgvsqwGNVldeNcp_uGExJcVH4dWqirUiukXm-sfumboudWs7iJId4GxJ9czhvdoXN5XtIC6CQjG67gGWG7e5UFzJKa2P0obhtXS73eDNefCzt7eH3rpJOVBzgmqYWNvEH5k9070poDs/s1600/2011-12-12+10.56.16.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsSgvsqwGNVldeNcp_uGExJcVH4dWqirUiukXm-sfumboudWs7iJId4GxJ9czhvdoXN5XtIC6CQjG67gGWG7e5UFzJKa2P0obhtXS73eDNefCzt7eH3rpJOVBzgmqYWNvEH5k9070poDs/s1600/2011-12-12+10.56.16.jpg" height="240" width="320" /></a><span style="font-family: Georgia; font-size: large;">The last bit of January was also a time of great reflection. I was asked to speak about an experience in the NICU to a group of people. It is part of the Patient and Family Centred Care at ACH and the series is called 'Patient and Family Rounds'. They generally have a Patient/Family member and a staff member talk about an experience. Since Trish (one of B's Primary NICU Nurses) and I still have a great relationship I asked her if she'd be willing to speak with me. Luckily she agreed! Before our talk though I took some time to reflect back on the NICU part of our journey and re-read some of the early blog posts. IT WAS SO HARD. I find it hard to go back to that time of profound helplessness and fear not to mention how in shock we all were by the events taking place. There is simply nothing (not even a 5 day NICU stay with our oldest son) that could prepare you for a NICU stay with a critical and extremely complex preemie that no one could possibly diagnose. It's not like B just had one thing, it was one thing on top of another, on top of another, on top of another, and so on. The fact that he's <u>still</u> undiagnosed gives you an idea of our helplessness at that time.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLR4El_6afKLg64viUs8TEbXpF9PSO0rkHJ8yDQlt7rIduCAgFx50Sf8o_QrqbhCwMdMpppJJnipVz1x22G-oc68LmAnaBofN7mG_5QwAqFQhsRqEzn2E2VERb68emQzEemOUQwoUj82A/s1600/2011-12-12+10.58.16.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLR4El_6afKLg64viUs8TEbXpF9PSO0rkHJ8yDQlt7rIduCAgFx50Sf8o_QrqbhCwMdMpppJJnipVz1x22G-oc68LmAnaBofN7mG_5QwAqFQhsRqEzn2E2VERb68emQzEemOUQwoUj82A/s1600/2011-12-12+10.58.16.jpg" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This picture now holds even more meaning and emotion for me...</td></tr>
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<span style="font-family: Georgia; font-size: large;">I've also known for a long time now (but didn't back then) that B was not expected to make it. That didn't come as a surprise when I found out some months later, the child was Septic and with Meningitis (not to mention the strokes, seizures and so on). We had our discussion about how much medical intervention we were willing to take because his organs were shutting down and they were prepared to start dialysis. What I didn't know is that one of the photos of our journey that I cherish so much now has a completely new meaning for me. It is the photo of me holding B for the first time that he went Septic and I was terrified to hold him. He was in agony due to all of the swelling in his stretched out little body and attached to more wires/tubes then I could count. I didn't really want to hold him that day, I was so scared of just causing him more pain but I relented when Trish pushed me to hold him, insisting it would be good for us both. What I found out last week is that both Trish and his other Primary NICU Nurse Suzie fought for me to hold him that day because they didn't think he'd survive and they wanted me to have the time to hold my sweet, precious child a few more times while he was still alive. Doesn't that take your breath away? I am SO thankful that I did hold him that day and it gave me back some of my confidence that I was in fact his Momma and that he was mine.</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">We did make it through most of the talk without too many tears although I certainly teared up on more than one occasion. Patient and Family Centred Care has become a burning passion of mine, it needs to be heard and it needs to be put first and foremost in our medical system. It is the reason why I sit on the Networks with Alberta Health Systems that I do, I am driven to try to make a difference for all the families that will follow in similar footsteps to ours.</span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I'm very blessed as well to have been asked by Trish to speak in March to a group of NICU Nurses again about this topic. Trish and I will again present as a pair and talk about our journey with Mr.B in the NICU.</span><br />
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<span style="font-family: Georgia; font-size: large;">We also got to go out and put in the donations that Torin collected for his 9th Birthday for Alberta Children's Hospital. I'm SO proud of both of my boys for their willingness to raise money for something that they both feel is important!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTXaXzJcnXv3vezCz2aHFJFGqjT7whNXpKLThTMI3ivFAhQ8I7bs5HREwtWa0ZWCRote2px5wz1IRGJElukBEvnx5awgnU3wi-vcUazawAFCy43k_aQLtrGNMTJ11Z-JA9SsJTQGjzNuQ/s1600/DSC00132.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTXaXzJcnXv3vezCz2aHFJFGqjT7whNXpKLThTMI3ivFAhQ8I7bs5HREwtWa0ZWCRote2px5wz1IRGJElukBEvnx5awgnU3wi-vcUazawAFCy43k_aQLtrGNMTJ11Z-JA9SsJTQGjzNuQ/s1600/DSC00132.JPG" height="320" width="202" /></a><span style="font-family: Georgia; font-size: large;">There are a couple of important things happening this week around the world as well. This week is not only Congenital Heart Defect Awareness but also Feeding Tube Awareness. Well since B has both (and both are life threatening/saving issues for him) we decided to go all out and do a Rockin' photo shoot to raise awareness. We also created a short video vinette for <a href="http://tinysuperheroes.com/" target="_blank">TinySuperheroes</a> (the makers of the AMAZING red cape you see in the shots) to raise awareness for CHD as well as a photo contest for <a href="http://mendedlittlehearts.org/" target="_blank">Mended Little Hearts</a> (<a href="https://www.facebook.com/MendedLittleHeartsNationalOrganization?sk=app_515720611858523&app_data=entry_id%3D565965" target="_blank">click HERE to vote</a>). Justine and I had a great deal of fun getting B's haircut into a Mohawk (as you can see he wasn't thrilled) and spraying it red. These are photos that I'll cherish for all time! I had to include so many because there are just so many to choose from!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Not happy about this haircut thing!!</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">The other part of reflection that has come for me is that we just finished our Radiothon for ACH this past week. The people of Calgary (this GREAT city) and surrounding areas of Alberta raised over 1.95 MILLION dollars in the three day Radiothon. That means more state of the art equipment for our amazing hospital among other things. It was a different experience being on the 'outside' of it this year (we were a part of it last year) but wonderful with hearing other's stories that we've gotten to know. It is a three day cry-a-thon for me but it is empowering as well! I am thankful for so many things but being Canadian, being Albertan (I was actually born in Calgary although I grew up on the West Coast for the most part) and living in this great city of Calgary with the best care in the <u>world</u> only a 10 minute drive away from us.</span><br />
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<span style="font-size: x-large;"><strong><em>From Our Home To Yours...</em></strong></span></div>
</span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-75273745282503181742014-02-09T22:09:00.001-07:002014-02-09T22:14:45.128-07:00Blankie Stories VIII - Erica, Mary and Sarah (Whipps-Dmytruk)<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">This is a 'blankie story' that is far past over due as we've been enjoying this blanket for months now (am a wee bit embarrassed that I've not gotten to it yet)! The ah-mah-zing blanket is very creative and beautiful and comes to us from the West Coast. The blanket was sent to us from a childhood friend of mine, Erica Whipps-Dmytruk, and her girls Mary and Sarah. I've known Erica since the very early 80's from the beach town I grew up in so this makes the blanket even more special!</span><br />
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<a href="http://1.bp.blogspot.com/-AY8xROOf3II/UsFYIKqY_6I/AAAAAAAAOS0/cwRTAQ8dO5A/s1600/2013-12-10+20.14.55.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-AY8xROOf3II/UsFYIKqY_6I/AAAAAAAAOS0/cwRTAQ8dO5A/s1600/2013-12-10+20.14.55.jpg" height="225" width="400" /></a></div>
<span style="font-family: Georgia; font-size: large;">The pictures don't do it justice but it is in the shape of a star and not just <u>any</u> star but a starfish! I am wowed by all of you blankie makers but I have to be honest, I had no idea you could even make a blanket into a star shape to begin with!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfaToJo0ffYzXbYky7155Gska5nsZ75bx47Flp6WSP2jfUwlYLSAPvVz-EqqRBAG9dfh2flRog8sDSVnV4K-zIjj2mCb9zTYfXzmVktcf4hz3d95ej68qbtP0l3fss67a0kt5zvX1FMvw/s1600/Starfish+blankie.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfaToJo0ffYzXbYky7155Gska5nsZ75bx47Flp6WSP2jfUwlYLSAPvVz-EqqRBAG9dfh2flRog8sDSVnV4K-zIjj2mCb9zTYfXzmVktcf4hz3d95ej68qbtP0l3fss67a0kt5zvX1FMvw/s1600/Starfish+blankie.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mary, Erica and Sarah</td></tr>
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<span style="font-family: Georgia; font-size: large;">Erica knows of Mr.B's love of the ocean and so her letter and blanket were both tied into that theme (the letter came with sea shells all over it!).</span><br />
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<a href="http://3.bp.blogspot.com/-7x1msxp7kuw/UsFZOlfq_UI/AAAAAAAAOaE/kR5kMVqeak4/s1600/2013-12-06+16.47.30.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-7x1msxp7kuw/UsFZOlfq_UI/AAAAAAAAOaE/kR5kMVqeak4/s1600/2013-12-06+16.47.30.jpg" height="225" width="400" /></a></div>
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong>Mr.B</strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong></strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong>My girls and I were inspired to create something that reminded us of the beach. I grew up at the beach and my girls, especially Sarah, have always loved it. It is a peaceful, calming yet vibrant and ever changing world. We loved to see the video of you enjoying it as we do. </strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong></strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong>This is our vision of a starfish, colourful, lumpy and fun. </strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong></strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong>We hope you enjoy this blanket and it brings you peace and warmth.</strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong></strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong>Love,</strong></em></span><br />
<span style="font-family: Georgia; font-size: large;"><em><strong>Erica, Mary and Sarah</strong></em></span><br />
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<a href="http://1.bp.blogspot.com/-RQjGAL_2xsY/UsFYL1lCuMI/AAAAAAAAOTM/P4uA97ACOKs/s1600/2013-12-10+20.15.28.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-RQjGAL_2xsY/UsFYL1lCuMI/AAAAAAAAOTM/P4uA97ACOKs/s1600/2013-12-10+20.15.28.jpg" height="225" width="400" /></a></div>
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<strong><em><span style="font-family: Georgia; font-size: large;"></span></em></strong><br />
<span style="font-family: Georgia; font-size: large;">As always I am touched to all of you that have reached out to us with blankets. We have so many colourful choices and textures to chose from. B never has less than 4 blankies in his bed each and every night and he loves each of them.</span><br />
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<a href="http://4.bp.blogspot.com/-xBOzo9OjZD0/UsFPWGHfP3I/AAAAAAAANjY/wJtBvRqV0vU/s1600/2013-12-26+20.50.11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-xBOzo9OjZD0/UsFPWGHfP3I/AAAAAAAANjY/wJtBvRqV0vU/s1600/2013-12-26+20.50.11.jpg" height="300" width="400" /></a></div>
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<a href="http://4.bp.blogspot.com/-QuIZV6Xq2po/UsFPiZXAx5I/AAAAAAAANkY/hxfJpZBIu2M/s1600/2013-12-26+20.50.55.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-QuIZV6Xq2po/UsFPiZXAx5I/AAAAAAAANkY/hxfJpZBIu2M/s1600/2013-12-26+20.50.55.jpg" height="300" width="400" /></a></div>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Thank you SO much Erica, Mary and Sarah! This starfish is incredible, colourful, and very cozy for us to snuggle with! Much love to all of you!</span><br />
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<a href="http://2.bp.blogspot.com/-byTYDMPfvuY/UsFQEAjii-I/AAAAAAAANnI/etkiXuDGXhw/s1600/2013-12-26+20.53.25.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-byTYDMPfvuY/UsFQEAjii-I/AAAAAAAANnI/etkiXuDGXhw/s1600/2013-12-26+20.53.25.jpg" height="480" width="640" /></a></div>
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-1109609412644568652014-01-17T19:04:00.000-07:002014-01-17T19:14:44.271-07:00Back To Mr.B<div style="text-align: center;">
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"><span style="font-size: x-large;"><strong>Happy Birthday to my great big 9 year old boy!</strong></span> </span></div>
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">We finally have our 'full' Mr.B back! He is certainly feeling more of himself the last few days which is so nice to see. He is 'chatting' all the time and very playful and happy (all of life is a smile when you're Mr.B).</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfDwSPRkYQnTAqvjmPc2mB2VGUcKp2P_wEIeZ1jkt8ElhahTzirK2GuZmGjSxOki91fQRG2ttxJ2XDtU14j5VGNZv3v6gO2JGnEAe_SHbIthKnxpqWEZYUGgeJVwA0gwMfa1AtxtEhBFc/s1600/SAM_0955.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfDwSPRkYQnTAqvjmPc2mB2VGUcKp2P_wEIeZ1jkt8ElhahTzirK2GuZmGjSxOki91fQRG2ttxJ2XDtU14j5VGNZv3v6gO2JGnEAe_SHbIthKnxpqWEZYUGgeJVwA0gwMfa1AtxtEhBFc/s1600/SAM_0955.JPG" height="320" width="213" /></a></div>
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">It's been a rough few weeks fighting off this virus with B finally feeling better and then I felt worse and vice versa. We ended up back in hospital on Jan 2 because when the Homecare Nurse came for a visit he was only able to Sat at about 90-91%. He had that audible 'wheeze' and was just not a happy boy. I still had our bags packed from our last stay and I knew that I was most likely going to have to take him in but was still trying to manage it all at home. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4j1c6MLkc-0fyQ4vLrv8HzIgk7FJOalwIthQSl9yh_v7SqnJNCoyC2Lc8w-gSKtaVEDHso62qcFr3gAn7qx1vYerszkqdw3Vmz8Ia-VRgDSuHc76ZU9agtXe53gwYeHqB6D5Fr2pJ4lc/s1600/SAM_0995.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4j1c6MLkc-0fyQ4vLrv8HzIgk7FJOalwIthQSl9yh_v7SqnJNCoyC2Lc8w-gSKtaVEDHso62qcFr3gAn7qx1vYerszkqdw3Vmz8Ia-VRgDSuHc76ZU9agtXe53gwYeHqB6D5Fr2pJ4lc/s1600/SAM_0995.JPG" height="320" width="206" /></a><span style="font-family: Georgia; font-size: large;">I didn't get to ACH until later that evening when Mike got home (if it was in any way urgent I would have gone right in). When we got there the little stinker was able to Sat 97% at the Emerge desk! We were still taken back right away due to the previous admission and the fact that his lungs were so tight. It was a Dr that we've had a few times (thankfully) and he's seen B at some of his worst Respiratory admissions so at least he had a baseline to go off of. The Dr walked in and B was laughing and playing with me, sating 97% on the monitor and the Dr said, "any other person and I say, why are you even here?". It's so nice to know that the Dr's do take me seriously and do listen to me (most of the time anyhow). I quite like this Dr because he then took a listen to B was not at all happy with what he heard. "Ahh, yeah, that would be why".</span><br />
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<span style="font-family: Georgia; font-size: large;">I explained the constant need for ventolin at home and that he'd not really progressed to getting better after our release on the 27th (which, yes, I did push for). We went for a repeat chest x-ray and had a chat with the RT. The xray actually did show some improvement over the one on Christmas day so that was reassuring as well as the fact that he was still able to maintain his sats. The main concern was whether or not B would be able to maintain his sats while sleeping. I knew that with B sating as well as he was that I could push to take him home and I also knew that Nurse Bo would be able to come by the next day to listen to him and check him over. The Dr wanted to hold us until B fell asleep but I explained with how over stimulated the ER makes him that that could be hours away (I also knew that the Emerge was packed). I asked about 'borrowing' a Sat monitor to read his overnight levels and the Dr was happy with that arrangement. Unfortunately the RT explained that I couldn't actually borrow one unless it came from the Respiratory clinic so that was out. I reassured the Dr that I was completely comfortable having him at home now that I'd seen how well he was holding his oxygen and I promised that I would bring him back in a heartbeat if needed (this Dr also knows how fast B can flip from 'ok' to very ill). He did stress that I should consider buying a Oximeter for home (measures oxygen and heart rate) and I had to laugh because I didn't want to bring B home at 7 1/2 mths without one and all the Dr's and RT's said if I needed a monitor then B wasn't ready to be at home. </span><span style="font-family: Georgia; font-size: large;">The Emerge Dr also said that he was on shift the next day as well and that if there were any issues to just bring B right in to see him.</span><br />
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<span style="font-family: Georgia; font-size: large;">I did have the Homecare Nurse come out the next day and just take another listen to him (he wasn't any worse or better) and she said he sounded about the same. <span style="font-family: Georgia; font-size: large;">We had an appointment with Dr.Cassie the next week so I was confident that we could make it through the next few days.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilpKP4VrYnU2P4Knk7YpN6-qTyLYUiGlDLBAjkGrrWQjD9-ItCtdpX19UajWbCqtss7GKe7ukmiDxNQZwWPWkx2LnkaN7SfQYNmDR87wyYuVMWzzfV0E3Jhj9pCcIjQ3rE9Nmo3DaVG60/s1600/SAM_1062.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilpKP4VrYnU2P4Knk7YpN6-qTyLYUiGlDLBAjkGrrWQjD9-ItCtdpX19UajWbCqtss7GKe7ukmiDxNQZwWPWkx2LnkaN7SfQYNmDR87wyYuVMWzzfV0E3Jhj9pCcIjQ3rE9Nmo3DaVG60/s1600/SAM_1062.JPG" height="235" width="320" /></a><span style="font-family: Georgia; font-size: large;"><em>**I just have to say how thankful I am for the Homecare Staff (our Nurses, RT's and Physical Therapist) because they will try their darndest to help out a family when needed! They will even rearrange a schedule so that they can come all the way over to your house!**</em></span><br />
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<span style="font-family: Georgia; font-size: large;">When we saw Dr.Cassie on Monday B was certainly still not himself but she did say that his lungs sounded okay. Works for me! I had arranged to get into see the Pulmonary (lung) Dr earlier then planned (we weren't supposed to be seen until March) so Dr.Cassie was happy with that follow-up to come as well.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ZhoBAaSZNp-bkchRPq-n0oM3OPf_UcSMW0JhjCf0HcjIHggYLNYatlOFh1Omgn7g8RSdmpxxZOf042Kj8W1_rRSWlVrJTFnypMhDkSSgmNqMLMxOsQ9tlLXhNNpWoBwE1fhL6f717n0/s1600/SAM_1017.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ZhoBAaSZNp-bkchRPq-n0oM3OPf_UcSMW0JhjCf0HcjIHggYLNYatlOFh1Omgn7g8RSdmpxxZOf042Kj8W1_rRSWlVrJTFnypMhDkSSgmNqMLMxOsQ9tlLXhNNpWoBwE1fhL6f717n0/s1600/SAM_1017.JPG" height="320" width="207" /></a><span style="font-family: Georgia; font-size: large;">We also got in to see Dr.Frank last week (Plastic Surgeon) and it had been almost 2 years since he'd seen Mr.B. Dr.Frank was very pleased to see B's jaw growth and said that he would rate B's jaw (<a href="http://lousierhicksbabyboy.blogspot.ca/2012/01/breathe-baby-breathe.html" target="_blank">Pierre Robin</a>) as being mild to moderate now when it had been severe when he was born! Yay for B! I was thrilled that we'd made the right choice not to trach B or to do the mandibular distraction surgery (move the jaw forward) when he was tiny and let him grow instead. (Of course if it had not been an option for B to breathe we wouldn't have opted out of it). It was a hard decision to make at the time, we were never expecting that B would be off his oxygen at 18mths of age, it was expected he'd be on it for many more years. I look back at what this child has overcome and I'm just stunned! When you hear him screech now you'd have no idea that one of his vocal cords was almost completely paralyzed after his heart surgery! Dr.Frank did say that yes, we'll most likely still need palate surgery (extremely high/peaked palate) but that it would still be a little ways off for now. From a jaw standpoint though? Dr.Frank was happy to see how things looked and said that B's jaw will continue to grow with him and may even 'catch up' by his third birthday. It is SO nice to have good news for a change!!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij6bqlEsYYsOZJTPxGpVSTZqH-6YYJyAfujcJ0EebLeJpqrelzLcR4-XheaUkfmjaR9IeZTq4GjbFVfnCfkOC3A0Vt-XXUO0E3eh6BdAH56Ncvossuu3KoKNf345la-CReY6qbZrCQ390/s1600/SAM_1199.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij6bqlEsYYsOZJTPxGpVSTZqH-6YYJyAfujcJ0EebLeJpqrelzLcR4-XheaUkfmjaR9IeZTq4GjbFVfnCfkOC3A0Vt-XXUO0E3eh6BdAH56Ncvossuu3KoKNf345la-CReY6qbZrCQ390/s1600/SAM_1199.JPG" height="320" width="306" /></a><span style="font-family: Georgia; font-size: large;">We had an anniversary of sorts last Saturday (on Torin's Birthday), it was our second year anniversary of donating blood. Mike and I decided two years ago that we wanted to give back and we weren't sure how. Our good friends Lorna and Amie thought of the idea of a blood drive and it worked! We got right on board with the idea and we've now donated with a group of 8-10 friends every 56 days (give or take) for the past two years. This makes me proud for several reasons but some of the biggest are that we were able to replace (and much more) the blood that B needed to survive. We have had friends and family literally from coast to coast go out and donate over the last two years (some of them multiple times) all in Braeden's honour. We've also had so many of our donors be FIRST TIME DONORS. That is huge! We are so proud to say that more then 1/2 of the people that have donated in B's honour did so for the first time in their lives! It was a great day to celebrate so B wore his new Tiny Superheroes cape and wowed the donors with his cuteness (and his story and probably the chocolate cupcakes!).</span><br />
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<span style="font-family: Georgia; font-size: large;">B continued to drag his butt a bit though through the weekend but we could see bits of improvement each day. The viruses this season sure have one heck of a long life! We started this week off (Tues) with another visit from Homecare and all three of them were very happy to see B up and at em (and maybe just maybe performing a bit for them). Shawnee (RT) said his lungs actually sounded great and Luci and Andrea (Nurses) were happy to see him a lot more active and alert then the last time they'd seen him.</span><br />
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<span style="font-family: Georgia; font-size: large;">We also met with our Physical Therapist and Dietician this week and they were both happy to see B progressing. He was actually back on the chart for his weight in the 3rd percentile...I'll take it. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Mr.Poser and Miss Sweet!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Teaching Araya how to crawl!</td></tr>
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<span style="font-family: Georgia; font-size: large;">Mr.B is making so many gains both physically, cognitively and in speech that it is amazing to watch. He is happily and consistently now saying 'Hi' when I (someone he knows) walk in the room and he is mimicking our intonations on other words. He may not be pronouncing them but he sure is trying out new sounds in his throat. He is crawling at a rapid pace (especially if he's trying to get somewhere he's not allowed) and he is certainly acting just like a 2 year old! For a kiddo who is 'globally delayed' I would say without hesitation that he's certainly acting his age! :) He has learned 'No' really well (both from us telling him and his response to us!), he is happy to get into everything (Rylie calls him a 'cute little monster' when the boys forget and leave toys around), and he's more than happy to have a fit when he can't/won't get what he wants (along with the lovely stage of hitting and head butting). I'm THRILLED to write down all of these stages (though not thrilled at all when the head butt comes my way)! He's growing in so many ways and he continues to challenge me each and every day.</span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com2tag:blogger.com,1999:blog-3097992480923616089.post-55173806542312025632014-01-09T16:27:00.000-07:002014-01-09T16:27:00.846-07:00The Season Of Giving Back<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">I hate being behind, I am (of course) my own worst critic, but this post is SO important!</span><br />
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<span style="font-family: Georgia; font-size: large;">I've learned many, many things (some I wish I could forget) in this journey but what I've learned is so important is to 'give back'. It was almost an 'instant' need for Michael and I, we wanted to give back. Mr.B has taken so much in terms of hospital support, etc and we felt that if there was a way to give back we would try to do just that. It is the reason that we started donating blood every 56 days (or so). The blood donations started initially with the want of replacing the 37 transfusions that B's had but then we figured why would we ever stop? The need for blood will <u>never</u> stop! If anyone is interested in joining us, whether in Calgary or wherever you are, please click on the <a href="https://www.facebook.com/pages/Braeden-Lousier-Hicks-Blood-Drive/236208633114766?ref=hl" target="_blank">link for the FB page</a> for updates! </span><br />
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<span style="font-family: Georgia; font-size: large;">I had a pressing need to give back to The Alberta Children's Hospital this Christmas, our home away from home. It is a big hospital with a great deal of amazing donors but I wanted to make an impact where I knew that I appreciated it when we were there, the NICU. We have a world class NICU over at Foothills Hospital (almost across the street per se) so when they built the ACH they didn't initially include a NICU (silly I know). They soon realized there was a need for somewhere to put these wee surgery patients that were coming in from the other NICU's for surgery. The NICU at ACH is <u>only</u> for surgery kiddo's and they are generally children that are born clinging to life (as was Mr.B). There are only 8 beds in total (but that is about to change this year!!) and they are generally always full.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV8wRfgFKovj3fAzUTDBdJoD8EOeX4myD-msJgx04YaTV8aZ2XWcdgeLg2kQ-g2blCmHwyI-stZp1PKOp7rUPUf7De9IXkgQqE-DQzlfiNbsO04YzTJRuGG5k76KMkgNU4thZV-3smoV4/s1600/2011-12-12+10.58.16.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV8wRfgFKovj3fAzUTDBdJoD8EOeX4myD-msJgx04YaTV8aZ2XWcdgeLg2kQ-g2blCmHwyI-stZp1PKOp7rUPUf7De9IXkgQqE-DQzlfiNbsO04YzTJRuGG5k76KMkgNU4thZV-3smoV4/s1600/2011-12-12+10.58.16.jpg" height="240" width="320" /></a><span style="font-family: Georgia; font-size: large;">Mr.B was born in November and due to part hope and part not grasping (or wanting to grasp?) the seriousness of our child's situation(s), I held out the hope that B would still be home for Christmas. If you've followed our story you already know that no, B didn't make it home for Christmas (or for another 7 1/2 months). B had heart surgery when he was 22 days old and from there went septic/meningitis and was critically ill (again) over that first Christmas. I would say it would have been an awful Christmas, and I suppose it was in a few regards, but it really wasn't in most. The ACH NICU was and is an amazing place. The staff are incredible, the Dr's are astounding and we felt that Mr.B got the best possible care. The staff went out of their way for the families that year, we came in to homemade baking, presents and so many other wonderful things through that hard week. The Nurses who work in Pediatrics do it because of love, not because of a paycheque and they are amazing. The Nurses who work in the NICU's do it because it is their calling, they are gifted with a gentleness and hope like no other. The NICU Nurses hoped with us, they laughed with us and yes, they even sometimes cried with us. Our journey in the NICU was made so much easier with the staff that supported us and cared for us.</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">I put a call out to anyone that wanted to help, either with a donation or with time and I was humbled that so many people were willing to help. While most of the donations came directly from Mr.B's family and personal friends some came from others that I've not had the pleasure of meeting and some came from other Parents of ACH that know all too well the life of an ACH Parent. For Mr.B's second Birthday I set up a 'wishing well' to take donations for ACH and our incredible family and friends donated over $400 to it and that was my starting point for the Season to Give Back.</span><br />
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<a href="http://1.bp.blogspot.com/-C8X2g_8xHXo/UsFRN-W1TdI/AAAAAAAANtM/azLiLgyI4tA/s1600/2013-12-24+16.35.16.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-C8X2g_8xHXo/UsFRN-W1TdI/AAAAAAAANtM/azLiLgyI4tA/s1600/2013-12-24+16.35.16.jpg" height="240" width="320" /></a><span style="font-family: Georgia; font-size: large;">Each fancy shoe box was filled to the brim! The majority of the money went to gift cards for Co-op, Safeway, restaurants, ACH Cafeteria, and the Good Earth (ACH coffee shop). Inside there was also a blanket, a new pair of booties/socks, a 'Baby's First Christmas' ornament, home baking, an inspirational word find book, and a 'set for life' lottery ticket. I am so proud to say that each box was worth about $250! Way to go Team Mr.B!!!</span><br />
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<a href="http://1.bp.blogspot.com/-ASTM1z9-szE/UsFRiAaI4-I/AAAAAAAANu0/crKMg6v7kgs/s1600/2013-12-24+16.52.02.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-ASTM1z9-szE/UsFRiAaI4-I/AAAAAAAANu0/crKMg6v7kgs/s1600/2013-12-24+16.52.02.jpg" height="240" width="320" /></a><span style="font-family: Georgia; font-size: large;">We had planned on 8 boxes total and that is what I had made and I did discuss with a few of you (as I wanted it to be a complete surprise) what I wanted to do if there was an 'extra box'. Sure enough, there were only 7 babies in the ACH NICU for Christmas this year and it gave me SO much pleasure to take our additional box and deliver it to one of my favourite families on Unit 2. This family hasn't known a Christmas at home with their little one (who is a few months older than B) as their child hasn't come home yet (in over 2 years). I was able to give them a little more love then I had initially planned and was so happy to do it! The 'Baby's First Christmas' ornament and the wee booties I gave it to one of my favourite Unit 2 Nurses and asked her where it should go (I know there are many kiddos that had their first Christmas there). She chose to give it to a baby arriving 'home' to ACH from heart surgery in Edmonton Christmas day. I added a huge box of chocolates for the Unit 2 Families in the family room and another box for the Unit 2 Staff and we were done! </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH2h0r1VelE3v3GYGdNDI7FdwoEu52NsYb4i8e6Yp8R8JNz3wJG1HvPGR4XMc_pUMCFkNDuAGt1uN-I0yUc7a-LZgMgX-G9eZmRy3AGrlx7M58dYMWBFIZ4ckHNdu086wep2y0OZQOFyo/s1600/SAM_0703.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH2h0r1VelE3v3GYGdNDI7FdwoEu52NsYb4i8e6Yp8R8JNz3wJG1HvPGR4XMc_pUMCFkNDuAGt1uN-I0yUc7a-LZgMgX-G9eZmRy3AGrlx7M58dYMWBFIZ4ckHNdu086wep2y0OZQOFyo/s1600/SAM_0703.JPG" height="320" width="240" /></a><span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia;"><em>**Thank you to Angela MacKenzie for helping me assemble and deliver the boxes, with B so sick I don't know how I would have found the time to do them otherwise!**</em></span><br />
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<span style="font-family: Georgia; font-size: large;">We were able to deliver them all on Christmas Eve (I had planned for earlier but life and B have a way of changing for me). I have heard back from two of the NICU Nurses that they were very well received and that the Dad's were the ones that were emotional. I <u>know</u> how hard it is to go down to a lower income after a baby arrives and I know how much stress it adds when that baby is sick. I also know that the Dad's feel a good deal of pressure to provide for their families and yet feel the grief of not being able to be present in the NICU as much as they'd like. I left the hospital that night with a sense of 'lightness' and happiness but also some sadness. (I think I also knew in my heart that we'd be spending our own third Christmas in a row there the next day)</span><br />
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<span style="font-family: Georgia; font-size: large;">For anyone that still wants to donate, B always has a page open for ACH donations on their site, <a href="http://www.childrenshospital.ab.ca/site/TR?pxfid=3920&pg=fund&fr_id=1050" target="_blank">click here</a>. (His story does need to be updated on it!)</span><br />
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<span style="font-family: Georgia; font-size: large;">Among all my Thank You's I need to give I also have another huge personal Thank You to give first.</span><br />
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<a href="http://3.bp.blogspot.com/-Ct4tvuUMkOU/UsFUWsi0RiI/AAAAAAAAN9E/OoU2aQ6Srkc/s1600/2013-12-14+22.50.26.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-Ct4tvuUMkOU/UsFUWsi0RiI/AAAAAAAAN9E/OoU2aQ6Srkc/s1600/2013-12-14+22.50.26.jpg" height="240" width="320" /></a><span style="font-family: Georgia; font-size: large;">On the night of December 14th we had 14 gift bags dropped off at our front door for us by a 'Secret Santa'. 14!!! (The hilarious thing is that the 'secret' was a bit busted since Mike saw the vehicle and I had a good guess who it was!) For this person to take the time out of their own busy life and shop and wrap up 14 individual gifts for the boys and us was, well, astounding to me. <strong>We are so blessed daily with the kindness and love that our friends and family bestow on us. I've said it before but can't say it enough, so much of this journey has been made bearable by our support network. </strong>(I'm not supposed to tell but this Secret Santa's name might rhyme with <em>Gina Lachuk</em>...or that could just be her name ;).)</span><br />
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<span style="font-family: Georgia; font-size: large;">To all of our donors (and for goodness sake if I've some how forgotten you please tell me and I'm SO sorry!!) in no particular order as I love you <u>all</u> the best!:</span><br />
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<span style="color: #990000; font-family: Georgia, "Times New Roman", serif; font-size: x-large;">THANK YOU!!!</span></div>
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<span style="font-family: Georgia;">Hicks Family (North Vancouver, BC)</span></div>
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<span style="font-family: Georgia;">Zebedee Family (Calgary, AB)</span></div>
<div style="text-align: center;">
<span style="font-family: Georgia;">Fawcett Family (Vanderhoof, BC)</span></div>
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<span style="font-family: Georgia;">Fawcett Family (Stetler, AB)</span></div>
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<span style="font-family: Georgia;">Fawcett Family (Ponoka, AB)</span></div>
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<span style="font-family: Georgia;">Tania Stephenson (Calgary, AB)</span></div>
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<span style="font-family: Georgia;">Ursula Stephenson (Calgary, AB)</span></div>
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<span style="font-family: Georgia;">Kelly Lock (Calgary, AB)</span></div>
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<span style="font-family: Georgia;">Reichel Family (Calgary, AB)</span></div>
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<span style="font-family: Georgia;">Harding Family (Rosemary, AB) <em><span style="font-size: x-small;">And for the wonderful necklace!</span></em></span></div>
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<span style="font-family: Georgia;">Jacobsen Family (Calgary, AB)</span></div>
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<span style="font-family: Georgia;">Reutlinger Family (Airdrie, AB)</span></div>
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<span style="font-family: Georgia;">Johnson Family (Burnaby, BC)</span></div>
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<span style="font-family: Georgia;">Begaliyev Family (Calgary, AB)</span></div>
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<span style="font-family: Georgia;">Martens Family (Calgary, AB)</span></div>
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<span style="font-family: Georgia;">Angela MacKenzie (Calgary, AB)</span></div>
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<span style="font-family: Georgia; font-size: large;"><em>And to the 90+ people in attendance at B's 2nd Birthday that donated to the 'Wishing Well', your donations inspired me to give back in a bigger way then I had originally planned! We love each and every one of you! </em></span><div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Georgia; font-size: large;"><em><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5s2oKPU4ecUTrPNRpMaPnNxH6DgJbvx0z371nFiWu_QCnEUYMxKlvdH8F-qUjW8IEux_GCsBlXj6ViX5nwhkbnE5SSbHcSvzXZTmvS_TQGzFvaXtT8jOqZMwZlwvvwBmmgZDq-cQy0AA/s1600/2013-11-08+18.23.45.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5s2oKPU4ecUTrPNRpMaPnNxH6DgJbvx0z371nFiWu_QCnEUYMxKlvdH8F-qUjW8IEux_GCsBlXj6ViX5nwhkbnE5SSbHcSvzXZTmvS_TQGzFvaXtT8jOqZMwZlwvvwBmmgZDq-cQy0AA/s1600/2013-11-08+18.23.45.jpg" height="320" width="213" /></a></em></span></div>
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<span style="font-family: Georgia; font-size: large;"><em><a href="http://1.bp.blogspot.com/-seu9GuO76Jw/UoGTwLwlO7I/AAAAAAAAMgc/gT4pue1mN1g/s1600/2013-11-07+10.47.56.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-seu9GuO76Jw/UoGTwLwlO7I/AAAAAAAAMgc/gT4pue1mN1g/s1600/2013-11-07+10.47.56.jpg" height="320" width="180" /></a></em></span></div>
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<em><span style="font-family: Georgia; font-size: x-large;"><strong>From Our Home To Yours...</strong></span></em><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-64433437481713895872013-12-30T04:50:00.000-07:002013-12-30T04:52:07.706-07:00Happy Due Date Birthday Mr.B<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-hwVnTY3ilg0/UsFSbxw1o-I/AAAAAAAANzU/3bRc5RlPvY0/s1600/2013-12-17+12.19.51.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-hwVnTY3ilg0/UsFSbxw1o-I/AAAAAAAANzU/3bRc5RlPvY0/s1600/2013-12-17+12.19.51.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We had to say good-bye once again to Grandma Hurray</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-ApHiXVCKwHo/UsFSi4FaLgI/AAAAAAAANz0/ybMaf6RMlVM/s1600/2013-12-17+20.34.12.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-ApHiXVCKwHo/UsFSi4FaLgI/AAAAAAAANz0/ybMaf6RMlVM/s1600/2013-12-17+20.34.12.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">T kicking Daddy's butt at the Rotary Flames House Christmas Party!</td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-qCmXESZGVis/UsFSydJQc_I/AAAAAAAAN1I/KNR50s3GlTw/s1600/2013-12-17+20.36.09.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-qCmXESZGVis/UsFSydJQc_I/AAAAAAAAN1I/KNR50s3GlTw/s1600/2013-12-17+20.36.09.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nose-scrunchers!! I LOVE this picture!</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I know it's been too long between posts when I'm wide awake at 3 am. I've been trying to get to writing for the past two weeks but life is just seemingly in the way (darn it all). In all reality, I've been trying to take care of myself and the rest of the household and going to bed instead of staying up to write. It is B's 'due date' Birthday today (as is mine) and I've been playing through different scenarios in my head about how life might look if he'd made it to his 40 weeks of gestation. I was hoping that he would not have to be a Christmas baby (as I grew up being one with my Birthday only 5 days after) but I never in my wildest dreams thought we'd be desperately trying to keep him in to be a November baby instead of an October baby!</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Mr.B did get discharged on the 14th (with a leaky g-tube) to only be back into Emerge on the 18th with severe pain around his g-tube. I had tried to get into see Dr.B but she was in surgery all day. Her (amazing) staff did see us in the clinic and Lana couldn't figure out the 'pain' either, just that for the amount of pain he was having didn't make sense with how it was appearing externally. It was only an Emerge visit (no admittance) and in reality, they could find nothing wrong (and we were going to see Dr.B the next day).</span><br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-44Oy0CcVMy8/UsFSJF4WO8I/AAAAAAAANx8/Wy-XyQ8D6ks/s1600/2013-12-19+19.54.10.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-44Oy0CcVMy8/UsFSJF4WO8I/AAAAAAAANx8/Wy-XyQ8D6ks/s1600/2013-12-19+19.54.10.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying (?) the big boys Christmas Concert!</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Off to see Dr.Brindle the next day and same thing, no outward signs on why B would be so uncomfortable. We had an ultrasound of the area before we went up to see Dr.B, which was reassuring. I was worried initially that the tube was too short (length from the stomach to the outside) but no, that was fine. I even was able to distract B enough that Dr.B got right in close to the g-tube and there was no real 'flinching'...so what is it?? The ultrasound looked good and the 'outside' looks good. We still don't know but he's still rubbing at it and at times seemingly in a great deal of pain with it. Frustration! Dr.Cassie did recommend trying him on Naproxen (as I was giving him Advil every 6 hrs to keep him comfortable) and that actually is helping somewhat. Being as it is an anti-inflammatory I think that that is somewhat 'telling' that there is something going on with it. </span><span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">The tube itself is great though, easy to use and it's certainly nice to be back to a 'button'.</span><br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-7Ow7IPmTXXE/UsFRwi1xPwI/AAAAAAAANwA/AYnD-s0hu7w/s1600/2013-12-23+18.56.38.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-7Ow7IPmTXXE/UsFRwi1xPwI/AAAAAAAANwA/AYnD-s0hu7w/s1600/2013-12-23+18.56.38.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">B's 'Tiny Superheros' Cape arrived right before Christmas but he<br />
was feeling so awful that I've not gotten a great shot of it yet..</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Back home we went and just tried to lay low for a few days and let the tube just 'be'. I do find that if I bathe him twice a day that the tube is a bit less irritating to him. I am really thinking that it is all due to the trauma he suffered to the stoma (tract into stomach) and the fact that some food (gastric juices) are leaking and therefore it burns and gets swollen <u>inside</u>. All a guess on my part but it makes some sense.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-BTgWOBDQ83s/UsFRoTKfXdI/AAAAAAAANvU/4WJT4XCrmJU/s1600/2013-12-24+19.04.53.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-BTgWOBDQ83s/UsFRoTKfXdI/AAAAAAAANvU/4WJT4XCrmJU/s1600/2013-12-24+19.04.53.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being a stinker butt!</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-4a6HGF_zXcA/UsFRp34AHQI/AAAAAAAANvg/Cupji4rQcb4/s1600/2013-12-24+19.05.00.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-4a6HGF_zXcA/UsFRp34AHQI/AAAAAAAANvg/Cupji4rQcb4/s1600/2013-12-24+19.05.00.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging in his awesome jammies (thanks Gina!)</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">The not-so-fun part of the past two weeks is that B started up with a bad cough on the 20th. He just started coughing that day and it was a dry hacking cough. Being as we've all been sick in this house it really wasn't a huge surprise but a bummer nonetheless. I had the grandiose plan to try my very best to weather through it at home. I have a stethoscope (because of B's heart/lung conditions) so I was listening to his lungs a couple of times a day to make sure they weren't 'crackling' or 'popping' (signs of pneumonia). What I was worried about (well one of the things) was that B's lungs can also sound 'okay' and he can be really sick.</span><br />
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<a href="http://2.bp.blogspot.com/-XnBH3Q5WGG4/UsFQSJt2MYI/AAAAAAAANoU/tr4jUlyyHuQ/s1600/2013-12-25+02.56.22.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-XnBH3Q5WGG4/UsFQSJt2MYI/AAAAAAAANoU/tr4jUlyyHuQ/s1600/2013-12-25+02.56.22.jpg" height="240" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I watched over him like a hawk, watching his chest for any signs of respiratory distress. The cough worsened each day and B's energy dropped quickly. I packed my bags on the 23rd, ready to take him in. It is all a dance in a way, when to take him in and when to try to keep him at home. If it was a year ago, I would have taken him in at the first real signs of the cough progressing (and fever) but I <u>know</u> his lungs are strong now, I <u>know</u> he can fight through illnesses (and I'm certainly more confident in my 'nursing' abilities with him!). I had the bags packed but he perked up a bit when Dad got home so we decided to wait it out through the night. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Again on the 24th, I was ready to go but I just so wanted B home for Christmas (I would have taken him in in a heartbeat if I didn't think I could handle it or if I thought he was in great respiratory distress). This was B's third Christmas and I selfishly wanted him to have it be his first Christmas at home with all of us. I was so torn because he'd cough and hack and then be playful for a bit convincing me that he was still doing alright. My in-laws arrived after midnight and Christmas was officially started.</span><br />
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<a href="http://4.bp.blogspot.com/-3PtCZ7i713M/UsFQdEc9r3I/AAAAAAAANpM/-9m6G0X4e4s/s1600/2013-12-25+02.57.30.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-3PtCZ7i713M/UsFQdEc9r3I/AAAAAAAANpM/-9m6G0X4e4s/s1600/2013-12-25+02.57.30.jpg" height="240" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">All snug in their beds (kinda) Christmas Eve</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Mr.B had a rough night (no surprise) and slept through most of the big boys opening their gifts. There was no way I was going to postpone the Christmas morning (since the boys aren't allowed up before 7 am as it is) OR wake B up necessarily. It was still a comfort to know he was home with us nonetheless. I knew that since it would be day 5 of his 'illness' that he'd either be on the road to getting better or he'd be going downhill fast.</span><br />
<a href="http://2.bp.blogspot.com/-II6n13hZBZM/UsFQgG7FSlI/AAAAAAAANpc/RRgvOfvOv_k/s1600/2013-12-25+09.05.58.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-II6n13hZBZM/UsFQgG7FSlI/AAAAAAAANpc/RRgvOfvOv_k/s1600/2013-12-25+09.05.58.jpg" height="240" width="320" /></a><span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">The big boys were thrilled that Grandma and Pappa had joined us for Christmas and surprised them this year (they didn't know they were arriving). We had a lovely time watching them open their gifts! Mr.B woke up absolutely miserable wanting Momma and nothing else. He clung to me most of the day and just got seemingly worse as the day went on. His inhalers were no longer giving him any real relief and his wheezing just got progressively worse and he wasn't able to handle much of his feeds. I had to suck it up and realize that my 'dream' of Christmas at home just wasn't meant to happen this year (BUT we did make it longer at home this year Christmas day then we did last year!). Mike and I took him into Emerge and they took him back right away. I knew his breathing had worsened through the day and I knew he was most likely going to need some oxygen support.</span><br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-JcBZ6fagwxk/UsFQuW_U3RI/AAAAAAAANqk/PHMii6Z4YI0/s1600/2013-12-25+09.29.49.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-JcBZ6fagwxk/UsFQuW_U3RI/AAAAAAAANqk/PHMii6Z4YI0/s1600/2013-12-25+09.29.49.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So much fun to just sit and watch them</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Amazingly he was still able to hold his own (sats of 95%) when we got there even though he was very audibly wheezing. I had to laugh because the Emerge Dr (who we'd not met before) said, "kids that sound awful like this generally have an x-ray that actually looks not too bad". She left and I told Mike that B's generally the opposite of that, he usually looks and sounds good but the x-rays are awful. Sure to form, B's x-ray was not good. As our stay grew longer he started to have more and more de-sats (oxygenation drops below 90%) and the blow-by oxygen just wasn't cutting it anymore. Onto the dreaded nasal prongs it was and Mr.B was so not impressed. He did troop through it though, in true B fashion. Unfortunately each time B drifted off he'd go into a de-sat again and the O2 would be turned up a bit more. The thought was that we were either looking at RSV or viral pneumonia (with bronchialitis). I kept telling myself that he is so much stronger then he was a year ago when we ended up with a 10 day stay on ventilator in the PICU due to bronchialitis (with a month long stay in total).</span><br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-fZOH2RpulLY/UsFRF_Ic3_I/AAAAAAAANsk/lHAWjiMkE8E/s1600/2013-12-25+11.05.34.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-fZOH2RpulLY/UsFRF_Ic3_I/AAAAAAAANsk/lHAWjiMkE8E/s1600/2013-12-25+11.05.34.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pappa snuggles as Momma got ready for the trip to ACH</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">The frustrating part is that we knew he would be admitted but the Emerge Dr didn't want to approve the admission until she found out if he could 'eat' or not. I had to run a feed for him and see if he would tolerate it (mostly). The Dr didn't want to send him upstairs if he'd just need an IV, so I get that, but it was a long and (to me) unnecessary hold up. We didn't get upstairs until almost 5 am and then once you get upstairs you have to go through a whole bunch of admission stuff before you can even dream of sleep. We also found out that (once again) there was no room for us on Unit 2 or on the Purple Team. Instead we were introduce to Unit 3 for the first time which (as you can guess) came with a whole lot more stress. It is very difficult to convey to people who Braeden is (when he is well) and to highlight only the necessary parts (that have to do with the admission) without leaving out too much of his life story so that they clearly understand him. There is no possible way to explain a complex child like Mr.B (especially after no sleep and spending the night in Emerge) to a brand new set of Nurses, it's very stressful.</span><br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-0FWVts1Lxdg/UsFNnP7sEDI/AAAAAAAANaQ/idLxq7VEt7I/s1600/2013-12-26+01.42.42.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-0FWVts1Lxdg/UsFNnP7sEDI/AAAAAAAANaQ/idLxq7VEt7I/s1600/2013-12-26+01.42.42.jpg" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My wee sick little Love</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I forced myself to leave with Michael (at 7 am) to go home and get a few hours of sleep because I knew if I stayed that I wouldn't get any sleep with people coming in and out of the room. When we left, B was on 3 litres of oxygen (which is a lot when you generally don't need any) and really struggling to catch his breath. Less then 24 hrs later B was without any oxygen and perking up a bit, even gave me some smiles. This super kid!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-rWOSZu2JVg8/UsFNuwu6HyI/AAAAAAAANa4/Z6O8FIQTVvA/s1600/2013-12-26+20.17.00.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-rWOSZu2JVg8/UsFNuwu6HyI/AAAAAAAANa4/Z6O8FIQTVvA/s1600/2013-12-26+20.17.00.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I wonder what's in this??</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-8P4yD92bIJ0/UsFOEAvq11I/AAAAAAAANcs/IlMqT6bGne8/s1600/2013-12-26+20.18.20.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-8P4yD92bIJ0/UsFOEAvq11I/AAAAAAAANcs/IlMqT6bGne8/s1600/2013-12-26+20.18.20.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Might as well bring some Christmas to him</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><a href="http://4.bp.blogspot.com/-VLElu5rHJpc/UsFOI3EFC0I/AAAAAAAANdE/68jv53WZOss/s1600/2013-12-26+20.20.25.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-VLElu5rHJpc/UsFOI3EFC0I/AAAAAAAANdE/68jv53WZOss/s1600/2013-12-26+20.20.25.jpg" height="240" width="320" /></a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><a href="http://4.bp.blogspot.com/-ulKWryDh_hE/UsFOaL33zRI/AAAAAAAANec/f3M1tdHvrWw/s1600/2013-12-26+20.25.53.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-ulKWryDh_hE/UsFOaL33zRI/AAAAAAAANec/f3M1tdHvrWw/s1600/2013-12-26+20.25.53.jpg" height="240" width="320" /></a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I expressed to the evening Nurse that I would be interested in taking him home the following day if he was able to maintain his oxygen at night while asleep. She was concerned due to the fact that he wasn't on him home routine of feeding but I assured her that his feeds were the least of my worries. I would be happy to run his feeds how he dictated that he needed them if I could take him home. The less time we needed to spend around all of the 'germs' of the hospital the better! </span><br />
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Looking and feeling a bit more 'B' like</td></tr>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">When I got into ACH the next morning B was still off the oxygen and after the many rounds of ventolin/steroid and nebulizers he was breathing well enough. I was confident that I could handle the rest at home and requested the Dr be paged so that I could spring him. Thankfully Dr.Wong was on the Blue Team (the one we were put on) and she knows myself and B somewhat. She was fine with me taking him home after we chatted a bit. She agreed that home would be better if I thought I could handle it and that I promised to bring him right back if not or if things went south again. Yay! What I was sure would be at least a week long stay when we went into Emerge was less then three full days...SuperStar Mr.B!!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Life is better at home with Daddy</td></tr>
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<a href="http://2.bp.blogspot.com/-7Ns4r717W9o/UsFNjRwq47I/AAAAAAAANaA/Pg7Ye6cFEQw/s1600/2013-12-27+17.39.04.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-7Ns4r717W9o/UsFNjRwq47I/AAAAAAAANaA/Pg7Ye6cFEQw/s1600/2013-12-27+17.39.04.jpg" height="300" width="400" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I can honestly say it's not been an easy few days at home, it never is with a sick kid, let alone a sick B. He's still been coughing hard and there's been the non-stop snot flow (you're welcome) and the diarrhea to contend with. I don't regret bringing him home though (even through my severe sleep deprivation) because he gets to spend more time with his Grandparents this way and I get to be with him 24/7 which is just not humanly possible when he's in hospital.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">So was it the Christmas I'd imagined, no (although I had of course run through the scenario of him possibly being admitted in my head) it sure wasn't but it was still good. Really, what it comes down to is that Christmas is only one day and it can happen on any day you really want it to (for Braeden). He's been slowly opening a few presents over the past few days and he'll open a few more until he's done on his own time, at his own pace. Life with B is never predictable and never will be. Next year he'll be that much older, that much stronger and who knows? Maybe his fourth Christmas will be the one where we all get to spend it together!</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I hope you all have had (or are having) a wonderful holiday season. Many great wishes for each of you as we enter into 2014 in less than 48 hrs. Have a safe and wonderful New Years!</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><i>**I am still behind a few posts for blankie stories and our 'Season of Giving Back' but bear with me, they will come soon!**</i></span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: x-large;"><b><i>From Our HOME (yes!) To Yours...</i></b></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-50125853732335557222013-12-13T22:07:00.006-07:002013-12-13T22:09:23.728-07:00Battered, Bruised, and Still Smiling<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgeN_QigkkXiLMlW3A77Jh4gTVdms1AudjDX92v_x9qhEh0RQOY6H78wkArmvx4TMt8FgbrDqq-qSO36YYa7CTCftFT-TAko2FOa8bMBccya6jHiZ1ZkENQHRuQtABD55nkI_KlIDhRsY/s1600/2013-12-09+14.24.44.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgeN_QigkkXiLMlW3A77Jh4gTVdms1AudjDX92v_x9qhEh0RQOY6H78wkArmvx4TMt8FgbrDqq-qSO36YYa7CTCftFT-TAko2FOa8bMBccya6jHiZ1ZkENQHRuQtABD55nkI_KlIDhRsY/s1600/2013-12-09+14.24.44.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hangin with some friends</td></tr>
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">It has been a very important day today not just because of Mr.B's surgery but because it's Mr.B's Daddy's Birthday. Not just any birthday either....don don donnnn, his 40th! Isn't this a great way to spend a big birthday with you child going into surgery??</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">You could generally say that I might have a bit more 'excitement' in my life then some. Nope, no need to be jealous here, my excitement as it's hardly every good!!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjEsR3Nj9xDc5HnL3eWD8GgaAKTSLCD_qQEfT1iy3u3d5bdOD8iLUV-6vYH6fwB0CxroXtKSkN3g99qgS27cttcZsr4Oi0MjHxq5SXqZVhnD_PFiMeP4YnaKrIt-6uFXXBdeGbWkyEwT0/s1600/2013-12-09+18.42.21.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjEsR3Nj9xDc5HnL3eWD8GgaAKTSLCD_qQEfT1iy3u3d5bdOD8iLUV-6vYH6fwB0CxroXtKSkN3g99qgS27cttcZsr4Oi0MjHxq5SXqZVhnD_PFiMeP4YnaKrIt-6uFXXBdeGbWkyEwT0/s1600/2013-12-09+18.42.21.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing in my room at RFH</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyhwTutjyLVvZ3O9glZeH_RxyN6ZsqwpntVV6iIkn5piZxBEt9ZPppq-GS_xBYQObIw81tNSwQLahnvOJDvBT58OvErGQN5RPq9xaVWvk894YHdKwjRE-DIWQG3VYhPYpc-kSXwiVVKcc/s1600/2013-12-10+20.15.28.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyhwTutjyLVvZ3O9glZeH_RxyN6ZsqwpntVV6iIkn5piZxBEt9ZPppq-GS_xBYQObIw81tNSwQLahnvOJDvBT58OvErGQN5RPq9xaVWvk894YHdKwjRE-DIWQG3VYhPYpc-kSXwiVVKcc/s1600/2013-12-10+20.15.28.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sliding around on my newest Blankie (story to come)</td></tr>
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<span style="font-family: Georgia; font-size: large;">We did get Mr.B discharged on Monday and over to the Rotary Flames House. I was so thankful that they had space for us because Mr.B had a wonderful time over there. He got to play and socialize. I can't stress enough of what an amazing resource the RFH is. We did however have to keep the stay 'under wraps' from the big boys, they would have been crushed to not have been included in the stay. Hopefully we can spend a weekend there sooner rather then later and spend some time as a family.</span><br />
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<span style="font-family: Georgia; font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8_uzd0n3dE0qS0v23vFdZlKgWDJqpmoQtEy4eMsgFkoH1UHdlvku0xv-63kRmWfD4CcTPZ_F7UxKMYR4QQrIgJZq07SpH0K8cYCwJvm8I_MoM-Z46TdzvZIbwf3DKvhsNr8xnCObNFy8/s1600/2013-12-12+12.11.55.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8_uzd0n3dE0qS0v23vFdZlKgWDJqpmoQtEy4eMsgFkoH1UHdlvku0xv-63kRmWfD4CcTPZ_F7UxKMYR4QQrIgJZq07SpH0K8cYCwJvm8I_MoM-Z46TdzvZIbwf3DKvhsNr8xnCObNFy8/s1600/2013-12-12+12.11.55.jpg" height="225" width="400" /></a></span></div>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">The excitement in my week didn't all come from B this past week though, oddly enough. Rylan (the 7 yr old with Scarlet Fever) lost consciousness one night while playing downstairs with his brother. I still don't understand the whole story as I wasn't in the house at the time (and didn't even find out until 6 hrs after the fact...yes, I'm still annoyed!). The best we can piece together is that Rylan was leaned over to reach for a clock and then just simply fell over. He does remember falling, "I bounced twice then nothing..." but then is blank until he came to with Mike over top of him. <u>How very odd!!! </u></span><br />
<span style="font-family: Georgia; font-size: large;">Mike didn't see it happen either but he was more concerned about a concussion where as when I found out I wasn't instantly asking about his resp rates, sats and heart rate, etc. (No, I don't have a life). Needless to say I went into Ry's room at midnight with my stethoscope in hand and proceeded to listen to his heart beat, rate and resp rates. I was still not reassured so I spent the night awake worried about Ry.</span><br />
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<span style="font-family: Georgia; font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZHJ5IZif6tBhWRt41aXssxpqqOq2RvkshfaGtjLiLSp4nDBNIK8VKD9X7I3mHItkDFcz9WW-Hfko-Y-puLiqJsKLcT_xW0KgLGbOVBYjsFtUFRl_gctEYv5LganysdhyCRCkD9Wr1H0Q/s1600/2013-12-12+12.12.49.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZHJ5IZif6tBhWRt41aXssxpqqOq2RvkshfaGtjLiLSp4nDBNIK8VKD9X7I3mHItkDFcz9WW-Hfko-Y-puLiqJsKLcT_xW0KgLGbOVBYjsFtUFRl_gctEYv5LganysdhyCRCkD9Wr1H0Q/s1600/2013-12-12+12.12.49.jpg" height="225" width="400" /></a></span></div>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I checked his heart again the next morning and it was still fine. I was very happy that we had an appointment with our Pediatrician that morning. Ironically she wasn't all that worried about the fact that Mike had found him unconscious. She was also curious if maybe Rylie had Mono all along and not Scarlet Fever...I don't know. We do still have the Cardiologist work-up next Wednesday and they'll do an EKG (again) and another Echocardiogram.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">In the meantime the kid is fully of energy, he is fully back to his pain-in-the-butt 7 yr old self (which is a good thing)!</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">As I said earlier, Mr.B had a good stay at RFH so when I had to discharge him from there this morning and bring him back across the parking lot he was not too impressed with me. He was even less impressed when we went into day surgery, he knew exactly where we were. Smart boy.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX2Pq286qdagWXfFEXDzqrXyzCm3sTWkxwokQKs1MSwdoJ-lfrY-83gW_G6JuSGi34Zs9Vlww422uNZ10y_meCERYKXEBYNvXKJYXMJtuvlzbRHVh_Y59orv44FSa6rRNNAtLD0jpyqWA/s1600/2013-12-13+09.11.14.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX2Pq286qdagWXfFEXDzqrXyzCm3sTWkxwokQKs1MSwdoJ-lfrY-83gW_G6JuSGi34Zs9Vlww422uNZ10y_meCERYKXEBYNvXKJYXMJtuvlzbRHVh_Y59orv44FSa6rRNNAtLD0jpyqWA/s1600/2013-12-13+09.11.14.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pre-op Toga fashion!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi066AE7H8nR_5mxgjIh7gvWt1M5HPqGyGpk8b-p8ERuWCe9ILaSBLgwPHNSkWJOYPNzyMSg6wR8AexWYlCwaEJwKObE5gF9cucBIGXA5JqtUa7RTj_jKDT0pI9vf_EIPC2i49oOnr9sU4/s1600/2013-12-13+09.59.58.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi066AE7H8nR_5mxgjIh7gvWt1M5HPqGyGpk8b-p8ERuWCe9ILaSBLgwPHNSkWJOYPNzyMSg6wR8AexWYlCwaEJwKObE5gF9cucBIGXA5JqtUa7RTj_jKDT0pI9vf_EIPC2i49oOnr9sU4/s1600/2013-12-13+09.59.58.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting</td></tr>
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<span style="font-family: Georgia; font-size: large;">We got through all of the pre-op jibber jabber and got taken to the waiting area (where everyone meets for a final hurrah) before stealing, I mean 'borrowing' your child. Dr.B came by to see the new tube and was happy I let her open it, Christmas come early! We never were able to get the non-balloon mini one but we did get a ballooned one that will just have to do for now. The Eye Dr was late so we had to wait a bit for him which didn't give me a lot of time to review with him (I've not seen him in like 6 mths since he told me he would do the surgery). B was a trouper and went right in with the Anesthetist and Momma went to take an Ativan...:)</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">The lovely Nurse Trish happened by while I was waiting which was great because she kept me occupied. Soon enough Dr.B came out to say that the new tube looked great going in so fingers crossed for this one. She told me they had about another 20 mins to go before they would call me back. I sat and clock watched and was very surprised when I got paged to return to the Unit. </span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">I arrived to find B already in his room with his Nurses. I was happy to see him but more then a little annoyed since it was conveyed to me that I could be in the recovery room to make the transition a bit smoother for B. He was in decent enough spirits though and wasn't even needing any extra oxygen at that point (Super Star!!).</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0tFqFMDL_rUGyukpmYXK9Xa7HBn94rBIgb_S9EggCqsCdXUnNCMq9rSNZMT2zSASJV-dlnWk9kaQTXGOBS4xExu9m4IjFgJwPZ-75sqEIHVS4Iqsx61naodv_nRzCIgmoK2oMPSYRRgc/s1600/2013-12-13+13.37.23.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0tFqFMDL_rUGyukpmYXK9Xa7HBn94rBIgb_S9EggCqsCdXUnNCMq9rSNZMT2zSASJV-dlnWk9kaQTXGOBS4xExu9m4IjFgJwPZ-75sqEIHVS4Iqsx61naodv_nRzCIgmoK2oMPSYRRgc/s1600/2013-12-13+13.37.23.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Now what have you all done to me??</td></tr>
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<span style="font-family: Georgia; font-size: large;">I was certainly quite taken aback when I saw him though...he didn't have the procedure done the way it had been described to me (at least the way I'm sure I was told). <em>What I was told (by the Surgeon that did the procedure today) is that he would put a string into B's brow muscle and in to the eye lid and it would 'lift' it up. He also went on to tell me that his eyes may not close completely anymore but that was 'typical' and kids get over it quickly. I remember specifically asking if his eyelids would be cut and he said "No". He explained that by doing this procedure B would have better lasting results and that we could do both eyes at once since the right would have to be done eventually.</em> Is it possible that I got all of that wrong? Yes, I suppose to a certain extent but I certainly didn't make it up either. Fast forward to today and imagine my surprise when I saw an incision the entire length of each eye lids.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigLoDY0MD6eJwPUzclnlznT-C8vIONjPGjOkNFfvyAabeaqW9cryPMmCG8e6AagE8VNOrKdSfCNMD9ycLjJsHIju4m4OknY_Fcyz5_vCeJTnCFACieXZIlp6SBux_e00mQZ8TwmQw13G4/s1600/2013-12-13+13.49.34.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigLoDY0MD6eJwPUzclnlznT-C8vIONjPGjOkNFfvyAabeaqW9cryPMmCG8e6AagE8VNOrKdSfCNMD9ycLjJsHIju4m4OknY_Fcyz5_vCeJTnCFACieXZIlp6SBux_e00mQZ8TwmQw13G4/s1600/2013-12-13+13.49.34.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting ready for a heavy metal concert?!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9VoGIjqVPnSchqIa1oQ53Y8VuGrzvBfkA7sVS_nvBakK6r94YgnvbjNWG_tqByuCf_2gxRkxtf8u4ugoYty3oAHNXxeKh4RMIKKgfrzAiIoX1HxKG6eSEeUlbiBHo0y2k9bgmmXQJ7vw/s1600/2013-12-13+17.43.50.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9VoGIjqVPnSchqIa1oQ53Y8VuGrzvBfkA7sVS_nvBakK6r94YgnvbjNWG_tqByuCf_2gxRkxtf8u4ugoYty3oAHNXxeKh4RMIKKgfrzAiIoX1HxKG6eSEeUlbiBHo0y2k9bgmmXQJ7vw/s1600/2013-12-13+17.43.50.jpg" height="300" width="400" /></a></div>
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">The Surgeon was no where to be found either, they generally come in and talk to you immediately after a procedure. I was asked by the Charge Nurse what the plan was and I told her I honestly didn't know. We were only registered under ophthalmology, not a 'team' so no orders were in the system to feed B or give him any meds. She then told me that the Dr. had left the building. Thankfully that wasn't the case as he came by shortly after that. He didn't understand why we were spending the night (obviously well versed in complex kids, not). "As far as I'm concerned they could just go right now"...and when asked about only being under Optho his response was "Well don't call ME if there is an issue". Wow, stellar.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiirq4BWE0gOUSbQjrMxDkZ2LeCPCdEM1VzS-JoW47ACIVbUlAe1hGkcvWkvOB67o4GgQQFWip3xs2_TyaQx3oxKQ4ABJTZyslbXzb3-E1uRaFarfmTqqQknVpj-fiaM5JVXTBrJjWmqMQ/s1600/2013-12-13+19.20.32.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiirq4BWE0gOUSbQjrMxDkZ2LeCPCdEM1VzS-JoW47ACIVbUlAe1hGkcvWkvOB67o4GgQQFWip3xs2_TyaQx3oxKQ4ABJTZyslbXzb3-E1uRaFarfmTqqQknVpj-fiaM5JVXTBrJjWmqMQ/s1600/2013-12-13+19.20.32.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Battered, bruised and still smiling</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">Of course in true ACH style we were picked up by Dr.Stoyan (who we had on Blue Team on 4th floor). She came by and was happy to see that he'd been able to tolerate a food. She also gave the okay to pull his IV out which was a good success.</span><br />
<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">His energy level is up (about 75%) and we'll take it. He's certainly in more pain close to his Tylenol/advil dosing but is otherwise coping really well.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp3aFjh6ZJ7g5U-BzPCH1Iinp02kWGsKmoqYT_rk166mR-ADo9Ss7YaGb25g1SnF8K0UezhK5-WpFAOzlBzdbZeB2sayF4IpNEfzlJ8zKZ0fqev91iv7tRBTDfBGnoaDZ9aa7TOJjBHxU/s1600/2013-12-13+21.49.02.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp3aFjh6ZJ7g5U-BzPCH1Iinp02kWGsKmoqYT_rk166mR-ADo9Ss7YaGb25g1SnF8K0UezhK5-WpFAOzlBzdbZeB2sayF4IpNEfzlJ8zKZ0fqev91iv7tRBTDfBGnoaDZ9aa7TOJjBHxU/s1600/2013-12-13+21.49.02.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">End of the night, bruising is coming through now</td></tr>
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<span style="font-family: Georgia; font-size: large;"></span><br />
<span style="font-family: Georgia; font-size: large;">My fingers are very tightly crossed for discharge tomorrow...and to stay out for a good long while! He is having some leaking from his g-tube port tonight so they'll have to keep an eye on it over night but it shouldn't be a huge issue (it damn well better not be anyhow).</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEPaq9vhqKui1BsPH88phIUxWknHcqYz98t032kl8hyjb0hoYkB2nWmgLXwZQl4HQiiqRql85XGrg74x9C8dMW97lc0MvI4U3cIK9LBUv6hqj_qnEADxDk5d0ayP88100LxIRF1b3PCiE/s1600/2013-12-09+20.29.06.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEPaq9vhqKui1BsPH88phIUxWknHcqYz98t032kl8hyjb0hoYkB2nWmgLXwZQl4HQiiqRql85XGrg74x9C8dMW97lc0MvI4U3cIK9LBUv6hqj_qnEADxDk5d0ayP88100LxIRF1b3PCiE/s1600/2013-12-09+20.29.06.jpg" height="360" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loving the Christmas Tree at RFH</td></tr>
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<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia; font-size: x-large;"><em><strong>From Our Home (Unit 2, yay) To Yours...</strong></em></span><br />
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<span style="font-family: Georgia; font-size: large;"></span><br />Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0tag:blogger.com,1999:blog-3097992480923616089.post-88923548373069252202013-12-09T00:49:00.000-07:002013-12-09T00:49:02.687-07:00Momma Burnout<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Hangin' with my Jenn-abelle! </td></tr>
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Hospital Burnout, that's the best name I can come up with...Hospital Burnout.<br /><br /><strong>Hospital Burnout:</strong> <em>When one has had it with trying to alternately be a SuperHero and trying to be in at least two places at once. Sooner or later you just have to run out of steam, adrenaline only gets you so far.</em></span><br />
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<span style="font-family: Georgia; font-size: large;">I'm happy to announce that this particular stay is at least coming to an end soon so that makes this bout of burnout tolerable. It is always around the three week mark (not that I don't have small bouts along the way) that I just feel so very D-O-N-E. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJldtmsbxVKjd9Qy69FZNi1F5CMfsnmTby3HnpDlp32PMdyQzRhyHNpRsQ8DtZdS6rXVYyNWbVUudBxiWfQM2kKSKWNNbn-Cp-zkMAXVLC6AnKNJ7n4hCqll4nVHWyXSL0EaDIXV3BNH8/s1600/2013-12-01+11.36.59.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJldtmsbxVKjd9Qy69FZNi1F5CMfsnmTby3HnpDlp32PMdyQzRhyHNpRsQ8DtZdS6rXVYyNWbVUudBxiWfQM2kKSKWNNbn-Cp-zkMAXVLC6AnKNJ7n4hCqll4nVHWyXSL0EaDIXV3BNH8/s1600/2013-12-01+11.36.59.jpg" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Torin's 'Thankful Garland' (Compliments of Kelsey)...so wonderful!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1zywdZegidymkCP_CUK_IG4N685aKnK2s_asvWeT5O1iac9tN5Z2KOP6xAJ-szXuHwiBiWYl-anAiBldSYyWQy9prBqGMOlCjInSVwLeSK-qu4Vc1PS6WlqjUFDE1E7AJOrO2r9wWmcc/s1600/2013-12-01+11.37.43.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1zywdZegidymkCP_CUK_IG4N685aKnK2s_asvWeT5O1iac9tN5Z2KOP6xAJ-szXuHwiBiWYl-anAiBldSYyWQy9prBqGMOlCjInSVwLeSK-qu4Vc1PS6WlqjUFDE1E7AJOrO2r9wWmcc/s1600/2013-12-01+11.37.43.jpg" height="180" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbp-zhtJAsXP7ckZXnHD5JGt0GL-Fjatml1ESm0OYkpzn4WD2AKDCeF8ZLMZjWe0aNon7TLheiV-Hw37Oyr4evdXbK_spCWhiAtbUm46wVT-2X7we3Nb9YfP0oxqL-EVWgL_oub3SB22o/s1600/2013-12-01+11.37.52.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbp-zhtJAsXP7ckZXnHD5JGt0GL-Fjatml1ESm0OYkpzn4WD2AKDCeF8ZLMZjWe0aNon7TLheiV-Hw37Oyr4evdXbK_spCWhiAtbUm46wVT-2X7we3Nb9YfP0oxqL-EVWgL_oub3SB22o/s1600/2013-12-01+11.37.52.jpg" height="180" width="320" /></a><span style="font-family: Georgia; font-size: large;">It's been a more challenging visit (?) then usual being up on Unit 4. We've had some truly lovely Nurses but it's really been a huge adjustment, for us and them. Unit 4 doesn't usually deal with the complex kiddos so it was certainly growing pains on both sides. The best way to describe it is that it is just a very different atmosphere up on the fourth floor. I am however extremely thankful that we had the bed and the care in a hospital that is currently running at 124% capacity (no I don't know where the other 24% are sleeping!).</span><br />
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<span style="font-family: Georgia; font-size: large;">I am also thankful for the meals that we were given throughout (thank you Kelly R, Sumyu, Rachel, and Jodi H) and extremely grateful that my Mother has been here through most of it since the big boys have been so sick. I don't know what I would have done since Ry is now on his third week off school starting tomorrow. Hmmm, I guess it could just be plain ol' Motherhood Burnout then.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">He's a trouper!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">SuperBoy survives yet another blood test! Cutie Pie!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I'm not too sick Mom</td></tr>
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<span style="font-family: Georgia; font-size: large;">Rylan is <u>still</u> sick, still under 'quarantine' per se. His <a href="http://kidshealth.org/parent/infections/lung/scarlet_fever.html" target="_blank">Scarlet Fever</a> rash has lessened considerably but he still can't be around pregnant women or babies. We are waiting (impatiently) for Cardiology to call for an Echocardiogram (ultrasound of the heart) to clear him to take antibiotics. The Dr did a whole work-up of tests, since it's been going on so long, to double check for <a href="http://www.mayoclinic.com/health/rheumatic-fever/DS00250" target="_blank">Rheumatic Fever</a>. We did have an ECG done but haven't gotten the results but we did also have an Abdominal/Renal Ultrasound done late last week and there is nothing glaring. His spleen is enlarged and his bladder walls have some thickening but nothing 'life concerning'. He can't go on penicillin since, on top of the Scarlet Fever rash, he had an allergic reaction. The other antibiotic, Biaxin, can lengthen the q-t interval in the heart beat so we need to be really sure the heart isn't affected (hence the Echo and the ECG). Needless to say on top of everything else, it's all just a bit much.</span><br />
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<span style="font-family: Georgia; font-size: large;">Torin, thankfully, has been on his antibiotics now since mid week (for Strep Throat) and is on his path of 'return to health'. </span><br />
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<span style="font-family: Georgia; font-size: large;">My Mom has seemingly been fighting a cold as is Mike...am I on candid camera here people??</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihPEj7xzwlVIOpVtXeV27HPUec3FmFlXGFhl5S63vEeUVnVCRYtO2D8wGGLqLBD7DMQ3s0Y8A3_nYra0JdT9gyx6QlKqAMqrbEGVcckIMml0aYzGOKpnF9iNMetMw1aQepiizCLJfZemw/s1600/2013-12-03+19.37.02.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihPEj7xzwlVIOpVtXeV27HPUec3FmFlXGFhl5S63vEeUVnVCRYtO2D8wGGLqLBD7DMQ3s0Y8A3_nYra0JdT9gyx6QlKqAMqrbEGVcckIMml0aYzGOKpnF9iNMetMw1aQepiizCLJfZemw/s1600/2013-12-03+19.37.02.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mr.Stink-eye...:)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Shake, shake, shake!</td></tr>
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<span style="font-family: Georgia; font-size: large;">Mr.B is however, full of himself and life. He is so full of 'piss and vinegar' that he's ready to go, go, go. It is SO nice to have our boy back!! He is up to his usual tricks, he's making Unit 4 work! I love to hear the stories of him ringing off his 'call bell' and making the Nurses come running. In the hospital the call bell, TV remote and light over the bed are all on the one remote. It also serves as the sound for the TV so often the Nurses will leave it close to his crib for the sound of the TV. Little do they realize that he knows how all the buttons work and it doesn't take much for him to snag the remote and start pressing them. I've heard several stories of how they couldn't figure out why the bells kept going off...hilarious!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR390bYypSMXoH5pzvn74h6fl4hsLfgaY9ToLkGtwA6Cf7orZ_jrNNMHyFD0JieoGHAHIaN_FQJ8wgr8_Z1ykanI6Flelj7Mk089cXlLCBIXnjnzlYULemSkWs58pQ1q-SwnEA_iTt5uY/s1600/2013-12-07+20.17.41.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR390bYypSMXoH5pzvn74h6fl4hsLfgaY9ToLkGtwA6Cf7orZ_jrNNMHyFD0JieoGHAHIaN_FQJ8wgr8_Z1ykanI6Flelj7Mk089cXlLCBIXnjnzlYULemSkWs58pQ1q-SwnEA_iTt5uY/s1600/2013-12-07+20.17.41.jpg" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Um, Momma, you kinda need some water in here!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4pIc1EWTkl0Zvf3_vrWTKzvDgUPBgvPLe3TByubLXFcqggrTR8rba2P-mDcb59X_HIqABhbolGYw9NNWOxW94XZm1NKjDlmf37NO4PVtqUpkz7dxIdaUxpGuzwWX015SkL8g89xBcSdA/s1600/2013-12-07+20.17.52.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4pIc1EWTkl0Zvf3_vrWTKzvDgUPBgvPLe3TByubLXFcqggrTR8rba2P-mDcb59X_HIqABhbolGYw9NNWOxW94XZm1NKjDlmf37NO4PVtqUpkz7dxIdaUxpGuzwWX015SkL8g89xBcSdA/s1600/2013-12-07+20.17.52.jpg" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting patiently for my favourite time of the day!</td></tr>
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<span style="font-family: Georgia; font-size: large;">B's also making leaps and bounds both vocally and cognitively. His mind is a-working at warp speed. He takes everything in and just absorbs it all. He's got the entertainment factor down for the Nurses that have gotten to know him, he holds his finger out for the vitals sensor to go on and will lay down and hold a leg up for his blood pressure cuff. I think it is also nice for the Nurses who've been around for the past three weeks to really see 'B' and not just smile and nod at me when I was describing what this little boy is really like.</span><br />
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<span style="font-family: Georgia; font-size: large;">The really good news today is that he FINALLY got taken off isolation. He's been on isolation for VRE (superbug) forever (it seems) and he's finally gotten back the three negative tests that he needed. Phew!! He can actually go out and be social now which is nice...no more need for everyone to gown and glove up upon entering the room (although it also worked in our favour to keep him 'healthy' in the hospital too I think).</span><br />
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<span style="font-family: Georgia; font-size: large;">So why is he still there? A few reasons: 1) He can't be around Rylan 2) He can't get 'sick' when he has surgery in five days, and 3) His urea levels are high</span><br />
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<tr><td class="tr-caption" style="text-align: center;">A very lovely and thoughtful 'feel good' <br />
from Angelica in Fl...thank you! :)</td></tr>
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<span style="font-family: Georgia; font-size: large;">The <a href="http://www.healthline.com/galecontent/blood-urea-nitrogen-test" target="_blank">urea levels</a> were initially thought to be raised because of the TPN (IV nutrition) he was on but he's been off TPN awhile now and the urea levels haven't dropped. The hope is with extra fluid boluses (water) this weekend his kidneys will be able to flush the excess fluid out and bring the levels down. I was hoping to 'spring' him on Friday but there was no where to put him and his levels were still too high. He is now on his regular 'home' feeds so the only thing holding us are his urea levels.</span><br />
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<span style="font-family: Georgia; font-size: large;">I do however have a 'back up plan' in place instead of coming home, we've got a space reserved for B across the parking lot at <a href="http://rotaryflameshouse.ca/" target="_blank">Rotary Flames House</a>. Being as B needs to be back in hospital Friday for his eye/g-tube surgery it, and that he can't be around Rylan it makes the most sense. They thankfully have room (they didn't Friday if we'd been released that day) so they've reserved a space for him from Mon-Friday. They are also being very flexible if for some reason he can't be released tomorrow then we can postpone or cancel at the last minute. I am SO very grateful they exist!!! For those of you not familiar with the RFH they are a hospice that helps families out with respite when you have a child with a life-limiting illness...amazing!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Showing Grandma my favourite toy!</td></tr>
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<span style="font-family: Georgia; font-size: large;">It's going to be a long week no matter how it plays out and I'm feeling really quite stressed at the idea of his eye surgery. I'm not sure how to describe it but I'm a little freaked out that it is changing B's appearance (lifting and opening his eye lids) AND that he's been through enough crap lately. I am however so happy that Dr.B is able to jump in on the surgery time and take out the PEG g-tube and put in the new AMT mini-one tube I ordered from the US (it's now in Chilliwack enroute here to Calgary!).</span><br />
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<span style="font-family: Georgia; font-size: large;">It is also Justine's last week for a bit as well as Kelsey's AND my Mom goes home in a week....yikes. Of course there is also this damnable holiday coming up that people keep talking about...we'll make it through all of it, ask me January 1st how I survived it (I'm predicting a bottle of Bailey's or two).</span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home (Unit 4) To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com2tag:blogger.com,1999:blog-3097992480923616089.post-81263326657543148582013-12-01T23:09:00.001-07:002013-12-01T23:15:49.631-07:00Holding Out Hope For Home<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">"How's Mr.B" is on everyone's mind and I'm sorry for such a long time between posts (again), especially when he's in hospital. Both of the big boys are sick right now, Rylan with Scarlet Fever (again) and Torin with Bronchitis so this Momma is spread even more thin and even more tired!</span><br />
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<span style="font-family: Georgia; font-size: large;">Braeden made my heart sing last night when he found the </span><br />
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<span style="font-family: Georgia; font-size: large;">energy to pull himself up on his knees in the crib. I was so proud of him because he did it completely out of mischievousness! He was desperate to reach (and play with) the IV pole with all of the buttons. It was SO great to see our boy up to his old 'tricks' that I started to laugh (and snap pictures) and he just laughed and laughed simply because he was overjoyed to be himself. The Nurses on Unit 4 are starting to see (and fall for) Mr.B in a new light, they are pleasantly surprised to finally 'meet' Mr.B.</span><br />
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<span style="font-family: Georgia; font-size: large;">Mr.B's now on his full feeds, running on a continuous loop. He will be starting his bolus feeds tomorrow with the hope of getting him to the point in which we can have a bit of time at home before being back for surgery on the 13th. You will note in the pictures that he does still have an IV in as well and they will keep it in as long as it holds on. We are giving him extra calories to try to help with the deficit that he had for almost two weeks. He's gaining weight (finally) and starting to look more like himself.</span><br />
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<span style="font-family: Georgia; font-size: large;">It was a full week last week though and certainly not all roses. </span><br />
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<span style="font-family: Georgia; font-size: large;">I came into B's room on Tuesday morning to find them <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiABuhBm7rlb49ShrE9u38jI-YL-fiKB1EVnTxGhaOHvPOOqMNJAGHBWmKU9V8P62Mo87AZoVuz77iWtSPJlhAjRx15RDEDv4vQlgIHWYE79LcJfPXcbEFGmUHWACGnq7drLtFxEKH_-4U/s1600/2013-11-26+10.48.04.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiABuhBm7rlb49ShrE9u38jI-YL-fiKB1EVnTxGhaOHvPOOqMNJAGHBWmKU9V8P62Mo87AZoVuz77iWtSPJlhAjRx15RDEDv4vQlgIHWYE79LcJfPXcbEFGmUHWACGnq7drLtFxEKH_-4U/s400/2013-11-26+10.48.04.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finally able to squeeze a real bath in between IV's!</td></tr>
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prepping him for a poke (an new IV) since he'd blown his line. B's poor arm/hand were swollen more then twice the size. We are so very thankful that they did catch it early enough that he didn't get a 'burn' from the TPN but it was certainly painful enough for him without it. I was NOT impressed to walk in on an attempted poke without being notified that it had blown for one but even more so to what the 'protocol' is for B to even get poked. Braeden is not an easy poke, not a simple in and out...ever really. I always ask for the Transport team (in the very least) since they seemingly have better luck with poking him. I would request the NICU Nurses each time if I could!! I stopped the Nurses then and there and told them I wanted to discuss with the Dr first.</span><br />
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<span style="font-family: Georgia; font-size: large;">Dr.Stockdale came in and I again inquired if he had to be poked again if we should just bite the bullet and do the PICC line? We chatted about the pros and cons and since he only needed the IV for a few days then it would make more sense to run another IV. I asked for Anesthesiology then to come up and place the line since it needed to be a really good line in order to run the TPN for another few days. </span><br />
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<span style="font-family: Georgia; font-size: large;">We waited for Anesthesiology but since they were so busy they put a call into Transport and sent them up. I generally give a 'two poke max' to people now for Mr.B, it just gets to be too much, too stressful for all involved. One good poke, she was in but the line blew...two more pokes (the third, after getting my approval for another poke, was more like another 5 pokes!!)...so no line. Anesthesiology did find space to come up, right after B fell asleep for his nap. I knew that if we didn't get the line in then and there who knew when they could come back. They too took three pokes but we did get a line in (and I knew I had no one else to call). It's another great line, it has held on now five days (and counting). I tried so hard to avoid B's 'thumb sucking' hand but alas, it was the only poke left. He's so busy chewing on his sleepers these days that he doesn't seem that put out by it (thank goodness!).</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">The awesome news was that we had a new IV AND we were running a very slow trickle through his g-tube (with success) so we could get rid of the NJ Tube! Yay! Justine and I both did a happy dance! We tried out hardest to protect his little face but unfortunately his poor cheek was a mess when we got all of the taping off. (It has since gotten much better). It was a 'good riddance' to the NJ!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">A sore cheek for sure!</td></tr>
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<span style="font-family: Georgia; font-size: large;">I had been doing some research online trying to find a new g-tube for Mr.B and we found one that both Dr.B and I love. I still don't have it but we do have people trying to help out so that is great! <strong>(If anyone wants to help we are trying to buy a new AMT Mini One NON-balloon, 14F, 1.5cm tube)</strong> I did find out this week that Dr.B can 'jump in' on B's eye surgery and put the new tube in for us if I can get it here in time. Did I mention how much I love this Dr? She wasn't scheduled for surgery that day but still found the time to book herself in for his little procedure...amazing (and I am never annoyed when one of our appointments get changed since I know she does what she can for 'her kids').</span><br />
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<span style="font-family: Georgia; font-size: large;">The g-tube is holding out, it is sore, it is leaking but it is working. He does certainly have some tenderness around the top of the port where the 'burst' was and there is some swelling there as well in the scar tissue. Dr.B had a look at it and we are keeping a close eye on it. Dr.B figured that with it still healing that it would be par for the course for now. The good news is that it's not gotten any worse...sore we can live with.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Being a stinker...</td></tr>
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<span style="font-family: Georgia; font-size: large;">We were able to get him up on his full calorie of feeds by Friday while running them continuous so he's FINALLY had a few days of his full caloric needs (more actually with the TPN still running). He's gone back over the 10kg mark too, which is reassuring to see...let's hope that this time he won't ever dip down below it again!</span><br />
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<span style="font-family: Georgia; font-size: large;">We are still on Unit 4 and we are still hoping to get downstairs to our 'home' Unit 2 but I can't see that happening after more then two weeks up here now. We are missing our Unit 2 Nurses desperately. We've had some lovely ones up here on Unit 4 but the ones that 'get' our needs are seemingly few are far between. Unit 2 is by no way perfect (oh we've had our issues) but they at least are around more frequently and anyone will offer a hand when one is needed.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMZt67hqutRQR1bCCRINN5FBjGrU1ewkZOrhsMX92R4pGyPtEJQXx50uaHrteWdxyEp78jQlGMn1urvOPMSzn5uObybHT1pNO7JhZoBn85kS7oqhOdMhBv0r07FJ-drXbW9Wn7ynbeuzU/s1600/2013-11-27+20.02.08.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMZt67hqutRQR1bCCRINN5FBjGrU1ewkZOrhsMX92R4pGyPtEJQXx50uaHrteWdxyEp78jQlGMn1urvOPMSzn5uObybHT1pNO7JhZoBn85kS7oqhOdMhBv0r07FJ-drXbW9Wn7ynbeuzU/s320/2013-11-27+20.02.08.jpg" width="320" /></a><span style="font-family: Georgia; font-size: large;">We received a beautiful gift in the mail last week as well. Danny Wright (Pianist and Composer) sent us his "Dream a Little Dream" CD and we love it! It is a beautiful collection of songs you'd know as well as some of his own compositions. Mr.B loves it (it's been playing 24/7 in his room) and I am so very thankful for the kindness and the generosity of Danny! </span><span style="font-family: Georgia; font-size: large;"> Click <a href="http://www.dannywright.com/" target="_blank">HERE</a> for his website!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVjV11y3RTJ4XLEFML_DOwoZSbd5ow6DteEHfdQR1yCpBgObXuB-LlXqeebw1gA1W9FU66w0DQsGS7qWSdyQkXHWj0g_5xtm4MMimVNCjfEdgh4BhXpeNIH-2fmgJaLQulGikWyJSHHyU/s1600/2013-11-27+20.02.49.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVjV11y3RTJ4XLEFML_DOwoZSbd5ow6DteEHfdQR1yCpBgObXuB-LlXqeebw1gA1W9FU66w0DQsGS7qWSdyQkXHWj0g_5xtm4MMimVNCjfEdgh4BhXpeNIH-2fmgJaLQulGikWyJSHHyU/s400/2013-11-27+20.02.49.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What's this Momma?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-Yb9luQcH4whJiOqudaZmzyv1bz03OR3LdFhTDJBn7cM7NQQkkS0TDM5ahIKDPd1THlJUF71s3xqyMz8y30vxPw0wKqbSTCmTaPGUuJP6jkzes5jJN3f3qd0kKodRPs2PRvmPWZT7kxc/s1600/2013-11-27+20.03.11.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-Yb9luQcH4whJiOqudaZmzyv1bz03OR3LdFhTDJBn7cM7NQQkkS0TDM5ahIKDPd1THlJUF71s3xqyMz8y30vxPw0wKqbSTCmTaPGUuJP6jkzes5jJN3f3qd0kKodRPs2PRvmPWZT7kxc/s400/2013-11-27+20.03.11.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love it! :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisd14Itc-hMcaR1R7197yO_FwlvL-EGDjV_aV-GhzXuLs1IXobxFnE6vzbBSSyTJQMA_el8VQoFNBW01c7H2TjtTA7vOB2W23Ox-taTdx2q_NTBfH6kqU4aPyJmxINC49bl4t6ZZM5JyY/s1600/2013-11-26+11.24.13.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisd14Itc-hMcaR1R7197yO_FwlvL-EGDjV_aV-GhzXuLs1IXobxFnE6vzbBSSyTJQMA_el8VQoFNBW01c7H2TjtTA7vOB2W23Ox-taTdx2q_NTBfH6kqU4aPyJmxINC49bl4t6ZZM5JyY/s400/2013-11-26+11.24.13.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Window chin ups!</td></tr>
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<span style="font-family: Georgia; font-size: large;">The other great news of the week is that our wonderful Dr.V is now Mr.B's primary physician for when he's in hospital. This means that each time we are admitted Dr.V will find out and be able to weigh in somewhat to his care. I'm so very happy with this news. I had asked her awhile back who B's primary was (since the complex kids are supposed to have one) but she didn't know. When she asked she was told he didn't have one so she agreed to take him on (with her already very full load!). For this we are SO thankful!</span><br />
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<span style="font-family: Georgia; font-size: large;">We are still on the Blue Team as well but this time with a Dr that's never known B. She seems (as I've still not met her) on board with my plan (with a few changes) on how to get his feeds up. I am still concerned about pushing him too far with his g-tube surgery (switch out) less then two weeks away. If the current one shows us any major issues (which we won't know until he is up and moving more) that could be a big back step for us. I've laid out a plan to get him home by Saturday, fingers crossed it will work AND our house will be healthy by then.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYD4lN_w0ToetALL1jh6u_eEO74p3363ZjvIB2c5nK7_RQMm2WAVb8UhOvZfadFwAyQjPh8B0PoyGT77kRYmfh6oO110_kiX_PacXSAg7drogKM4b2eb2ZQsXqwurRl-ZWZPbowWIp6AM/s1600/2013-11-30+16.06.05.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYD4lN_w0ToetALL1jh6u_eEO74p3363ZjvIB2c5nK7_RQMm2WAVb8UhOvZfadFwAyQjPh8B0PoyGT77kRYmfh6oO110_kiX_PacXSAg7drogKM4b2eb2ZQsXqwurRl-ZWZPbowWIp6AM/s400/2013-11-30+16.06.05.jpg" width="400" /></a></div>
<span style="font-family: Georgia; font-size: large;">Mr.B did get swabbed for Strep tonight just to be on the 'safe side' since he's got a (wee) bit of a rash on his back (no other real symptoms). I wouldn't otherwise be concerned but with Rylan's crazy face/chest/stomach/lower back rash I'm a little nervous. I had to tell him this was in no way a 'challenge' for him to rise to the occasion for.</span><br />
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<span style="font-family: Georgia; font-size: large;">I can't believe that we are now into December. People keep asking me when we are coming home and my only goal is to have all three kids home (for the entire day, selfish I know) for Christmas day. </span><br />
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<span style="font-family: Georgia; font-size: large;">THAT Mr.B IS a challenge for YOU!! :)</span><br />
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<span style="font-family: Georgia; font-size: x-large;"><strong><em>From Our Home (Unit 4) To Yours...</em></strong></span>Liahttp://www.blogger.com/profile/01198352493700978048noreply@blogger.com0