In Honour of Gavin Leong and Chasing Rainbows

We just got home from our 8th successful Blood Donor Clinic!  I, unfortunately, couldn't donate again today due to low iron...so frustrating but I don't know if I'll be able to donate until I start getting some sleep (Mr.B).

I am so touched each 56 days when we go to Canadian Blood Services because they are always SO welcoming and SO happy to see us (Mr.B) back.

I am also so touched at my wonderful family and friends that troop down there with us, tirelessly, and give a piece of themselves in honour of our son.  I hear so many times from people when I tell them how we run blood clinics every 56 days to honour the life saving blood that B received (35 transfusions in his first 10 weeks of life, 37 transfusions total), that they 'have been meaning to'.  Well people, GET OFF YOUR BUTTS!  Blood is in constant need in this country (as it is worldwide) and there will come a day (if not already) where someone you know and love will need a transfusion to possibly save their lives.  It only takes an hour total and you are quite possibly saving someone's life.  Think about that for a moment if you will, ONE HOUR of your time is EQUAL to someone's LIFE. (Okay, I'll get off my soapbox!)

Mr.B's handsome Daddy donating for Gavin

We did something different today as well, we donated today to honour another little boy who so tragically lost his life last month.  Today we donated in honour of Gavin Leong (Kate's blog link).  No I never had the pleasure of meeting this little boy but I do follow his Mom's blog and their story has always touched me deeply.  I introduced many of you to their story on our Facebook page and I know there are some of you following it now and giving your support to their grieving family, THANK YOU!  Gavin's story is similar to B's in the sense that he had an incredibly long road of hospitalizations and specialists shaking their heads (mostly in a good way) to the why's and how's of these boys.  Like B, Gavin also had an undiagnosed underlying genetic syndrome and also like B, had cerebral palsy (among other similarities).  Kate (Gavin's Momma) has asked that people continue on honouring Gavin and his memory by completing good deeds and selfless tasks in his honour (click the link to her FB page).  It was our pleasure today to donate in honour of sweet Gavin, so many miles away but so close to our hearts.

Dana, ACH Volunteer Extraordinaire and Friend

Gorgeous Jenn-a-belle, Friend Extraordinaire

Kelsey-kins (and baby Araya hiding behind B), Special Needs
Asst/Aide Extraordinaire and Friend

Tania Teacher Extraordinaire and Friend

Like I said, get off those butts people!  If you can't give blood, go out and perform and act of kindness, just because!  We can all make the world a better place! :)

From our home to yours.

Fundo-What??

We seem to have found a major set back with a constantly growing boy, it would seem as though Braeden's Fundoplication has let go or at least loosened a fair amount.  What does this mean?  Have you ever had a nice case of acid reflux?  B feels this most of his day, not to mention the frequent retching episodes when he is laying down (which is how he spends 90% of his time) because of the back up of stomach contents in his throat.  Of course being Braeden, he's coping with it all (better than his Momma) and just stopping long enough to cry and retch then carry on.  How does this kid do it?  What would cripple most adults to their beds (or at least non-stop whining), makes B miserable at times but still just happy to carry on.  How much one can and does learn from this little Superman!
 

Getting stronger and more coordinated!  When he gets
tired he just lays down for a bit and plays on his side.

We are trying to slow down his feeds to run over 2 hours and upping his acid reflux meds but the main problem is that two of his feeds are run while he sleeps (or at least is laying down).  We used to have his crib mattress propped up at a 30 degree angle so that he was upright while sleeping but he's moving too much now to have it set like this.  I am really hoping that I won't have to switch him to continuous feeds (small amount of formula running into his tummy 24/7).  I'm not sure how one can have a child on a continuous feed when he's active and rolling all around the floor, not to mention desperate to crawl!



One of his g-tube Nurses told me three times in our conversation today, "Lia, you know what to do if it is too much", but to take him into be admitted seems like a failure on my part right now.  I don't want to have to confine a moving, happy baby to a hospital bed (not that he wouldn't have a wonderful amount of beautiful visitors!).  So we will persevere with trying to keep things under control as best as possible until we get to see Dr.Brindle (Surgeon Extraordinaire) on Thursday to see what she has to say and suggest.  I'm not sure if a repeat surgery is even an option as he already has a small stomach before the Fundo.
 
My plan for now is to take a lesson from B and just relax and only freak out when it is really necessary.

The awesome things that are happening?

Such L-O-V-E

Ashley (who we lose in less than 2 weeks...) has taught Mr.B to 'high five' but just like the smooches that some of his favourite Nurses taught him, he does it only really for her!  What a turkey!!  He has fallen in love with Ashley almost as much a she has him so we will be certainly teary eyed to see her go! 

Mr.B's abdominal strength is getting to be so awesome!  He's doing crunches while he's on the floor...now if we could just figure out these crazy back muscles. 

B is also taking two toys and banging them together (mimicking).  The hilarious thing is that he'll do it and quickly throw the other toy aside as he hates having more than one toy at a time.

Coolest cat on the block!

This child continues to amaze us and make us laugh uproariously each and every day.  We are enjoying our nice warm weather and taking B outside to soak in it as he seemingly loves the outdoors. 

My special guys!

I got to have the most wonderful 'date night' with two of my favourite men in my life and we got to take Ashley as a 'thank you' for all that she's done for us over the past few weeks.  We had to opportunity to go see "Amaluna" by Cirque du Soleil and it was absolutely amazing!  We were gifted the tickets by the Starlight Children's Foundation (they are who you $1 goes to when you donate at the till at Toys R Us, they sponsor/support chronically/critically ill children with life limiting illnesses), and it was so very special for us to attend and have a fun time together through all of the stress (and not to mention a typically grumpier Mommy!).  Although I was going to take B, I opted out as I thought that it is really important to Torin and Rylan to have lasting memories of their time with Mom too.  It was a great deal of fun and we were so blessed when we had our seats so graciously upgraded to be front and centre, certainly some of the BEST seats in the house!!  I think that the boys will remember the experience and I'm so thankful that I could offer it to them at this time (thank you again Starlight).  Although I do have to say, one side effect is that I really realized just how un-flexible I really am!

My Clowns!!

Momma and Ashley clowning around (I love that T took
this and his finger is proof!)

My sweet clown who was not too impressed when Ry
donned the nose on him, we took at least 10 shots
trying to get it on his nose!

Life is certainly not all sunshine in our house but it sure is full of love and laughter!

From Our Home to Yours...

We Have Lift Off and I'm NOT Medically Trained!

Happy 1/2 Birthday to our Big Boy!!!  The longest and yet shortest, the happiest and yet scariest 18mths of our lives!



g-tube inflated, the balloon goes in the
stomach and the 'button' goes on his tummy

It has been a rough week and a bit as we are still dealing with this 'infection' that B's been fighting.  We had a first last Monday morning, an incredibly scary/crappy start to my week, Mr.B's g-tube just 'popped' out of him.  Yes, the whole G-tube.  Yes, it was still inflated.  Yes, it made me panic and bit.  And NO, it isn't supposed to happen!  I'm still not sure how it did happen!  How does a whole balloon (size of a nickel) come out a hole the size of a drinking straw??  The most bizarre thing was that B wasn't traumatized by it's ejection, he just flinched.  Now normally when I'm changing him and the g-tube gets accidentally tugged it hurts him (makes sense) but this time I barely snagged it and POP out it came!  Freaky!  So of course I started swearing and Ashley (bless her heart) said, "wow, I've not heard you really swear!".  My calm (not) response was, "yeah, well there's more of that coming!".  I did think quickly though and covered the hole (of course it is a direct line into his stomach) and got Ashley to take over holding the cloth on it (did I mention this woman is amazing under pressure?) while I deflated the balloon and got ready to reinsert it.  Now, I have to say a very large thank you (and yes, you can say you told me so) to Dr. Brindle.  When we were still in hospital Dr.Brindle made me insert his g-tube.  I was not a willing participant let me tell you!  I told her I wanted to kick her in the shins for making me do it and she replied that I'd thank her one day.  So "Thank you" Dr. Brindle, because of you I was able to somehow summon the confidence to reinsert it again.  I did some serious deep breathing and then gave it a go and got to reinflate it while Braeden writhed in agony.  I'm certainly not as smooth as a Surgeon or a g-tube Nurse!  I'm pretty confident in knowing that both Ashley and I were traumatized that day.  I got B cuddled up and called the g-tube Nurses line, while trying not to cry and when Karen (g-tube Nurse extraordinaire) called me back she said that, "yes, sometimes they just come out" and that I had done the right thing by reinserting it but that I shouldn't have used vaseline to lube it as it's not digestible (ooops, I panicked and wanted it to go in better/smoother).  So I guess you could say we got through it and survived but I've lost my confidence again in leaving B with anyone.  How do you possibly 'train' someone for the possibility of the g-tube 'popping' out?  Not cool.



Secrets being whispered by TT

Our Monday went on to be an even worse day as B went into Genetics for his skin biopsy.  They put a numbing cream on an hour or so before the biopsy so it was supposed to be fairly 'painless' but B is so over the whole 'Dr' thing now that he just screams as soon as someone comes at him with a stethoscope.  Needless to say I got to hold my child down while the took a core sample (they take about a centimetre deep of tissue out) out of his sweet baby thigh.  I asked the Dr if she got a good sample and she told me she could see his fat layer (gag!!!) so she thought it should be good.  She told me it looked like a good sample and hopefully it will grow assuming it didn't get contaminated otherwise we'd have to take another one (or NOT).  Needless to say a week later and B has a nice hole in his leg...makes me feel so awful that I chose to put him through that.  It is so hard to know sometimes what the right decision is for your child in the time.  We'll see what and if anything comes of it but they certainly won't be taking another sample if for some reason this one is tainted!  The good news is that Ashley can now say she's had exposure to g-tubes and medical procedures. 



Entertainment by Rylie

Mr.B continued(s) to fight his virus last week and by Thursday I realized that he really wasn't getting any better.  He had an initial period where he got better with his three days of steroids (and the continued use of inhalers) but then just plateaued.  I talked to Respiratory and they suggested another three days of the Dex (steroids) and a visit to our ENT to have his vocal cords scoped so that we could see why his breathing has gotten so much noisier.  Back on the steroids we went and he did get a jump at getting better again but is still (again) not getting over it.  He's been retching so much more lately too that he's been blowing open his feeding tube and losing entire feeds (when the g-tube gets under pressure it can pop open a valve and the entire stomach empties due to gravity and pressure on the bed/floor/etc).  He's actually even been retching in his sleep on and off and sleeping through it.  I think it is mostly mucous that is setting off a vagal reaction in him (gagging and retching).



Such L-O-V-E
 

My day started off today with B asleep and me checking on him this morning with an entire feed under him (soaked bedding and sleeper) and this is after a sleepless night of fighting a migraine and listening to him (and repeatedly checking on him) retch in his sleep.  Between the five retching episodes and the need for a bath (him, not me, I did shower), the kiddos were late for school and we rushed off to the hospital for a day of appointments.  B started off with a Hearing appointment and yes, we will need new ear tubes but we can hopefully wait and just 'back onto' another surgery.  Our Hearing Dr is also our Vocal Cord Dr (Dr.Brookes, Ear Nose and Throat Dr) so he took us in the next room for a vocal cord scope.  Yep, it is as unpleasant as it sounds, they take a tiny flexible camera and send it up the nose and down the throat.  It is however kinda cool to see his vocal cords.  We (he) compared it too his last scope and it seems as though the right vocal cord isn't opening fully (it is supposed to be the 'good' cord).  He's got some swelling in the cords and it slows them down.  If you or I got swelling we'd sound a bit hoarse but for B to have swelling it means his vocal cords work harder (and slower) which makes breathing (and swallowing) harder.  Dr.Brookes is happy to just ride it out for now and see how B progresses over the next few weeks with this until we decide to do any further testing or more rounds of steroids.

So fresh off his scope I carted him over to the g-tube Nurses and got his g-tube looked at (it's been incredibly sensitive since I had to reinsert it, after I, you know, pulled it out!!) and she burned off the tiny bit of granular tissue.  (I just realized that this posting might need a 'gross' warning at the top of it, sorry folks!).  Poor Mr.B! We did get a very nice visit in though with one of our fav NICU Nurses Trish after that though! 

Then off to pick up the brothers  from school at lunch only to return to ACH for a Cardiology appointment for Ry to have a Holter Monitor put on (he had another episode a few weeks ago of severe chest pain where he came into the house clutching the middle of his chest, aren't my children lovely and stress-free??). 



Happy Pants

And finally we rounded off our day with a visit to Vision to discuss B's droopy eye lids.  We're going to "try" to patch Mr.B's right eye to see if we can force the left eye to work a bit harder to strengthen it.  It won't help the 'droopiness' but it strengthens the pathways from the eye to the brain.  We are still waiting to get in to see the eyelid Plastic Surgeon to see about our surgery options but we'll try out the patching for now.  I'm not too sure how that will fly with B but we'll give her a go anyhow.



Getting a hang of this 'playing' thing

You can certainly say my life is never, ever, ever, ever, ever, ever (you get the idea), dull.



Reading with Daddy

Oops, all done!!

So now that you've made it to the end of the 'grossness' I've got AMAZING NEWS!  We have movement!  We have LIFTOFF!!  Mr.B has started to crawl!!!  He does it in typical B fashion (forging his own path) by putting his forehead on the ground for leverage but he is slowly but surely moving in a forward motion!  He is also getting faster at moving in reverse as well!!  So on his 18mth Birthday, for your viewing pleasure, the ASTOUNDING Mr.B:



From Our Home to Yours...

 



Daylight

Day 2 and we're still at home!  It was a rough day, Mr.B goes from happy to very unhappy quickly when he's not feeling well so he was certainly in need of extra cuddles tonight.  The steroids seem to be kicking in but he still screams his way (breath-holding screams) through the inhalers like I am torturing him by making him breathe.  Poor Ashley had to leave the room because B crying makes her so sad for the 'always happy' boy she's gotten to know.

He has been asleep for an hour now (yes, I should be asleep too but I am just enjoying the blissful silence, listening to Mr.B breathe through the monitor and the oxygen machine whirring away beside me).  We just weathered a huge coughing episode when I went in to turn off his feeding pump (huge benefit to g-tubes, feed while baby sleeps!).  I guess the coughing is good, he's moving stuff out of his lungs but it is so hard to hear.  He wouldn't settle back down after the coughing, (no surprise there) so I sang him 'our' song, "Daylight, by Maroon 5".  Not necessarily the best or most orthodox of lullabies but for some reason it just clicked with us and he smiles his sweetest smiles when I sing it to him.  It was on the radio a lot the last time B was in the ICU and I bawled listening to it one night as I was driving home, leaving my child to sleep alone (so that I wouldn't have two other stressed-out children).  It is rather morose (which seems to go with my general mood lately), I guess when you listen to it in the context that I do, it being our last night together, but it soothes us both (and who doesn't love Adam Levine?).  He was snuggled with one of his knit blankies, thumb in mouth and kept turning to look at me and smile as I sang to him....how can you NOT love this kid??

The not-so-great news is that Michael and I are both running fevers tonight, double sigh.  The wonderful news though is that we had 22 degrees here today and I finally got to open all the doors and windows and aired out this 'sick' house!  What a glorious feeling it is to breathe fresh, warm spring air in the house!

The plan is for a 'quiet' family weekend, fingers crossed on that one! 


 "Daylight"
- Maroon 5

Here I am waiting, I’ll have to leave soon, why am I holdin’ on
We knew this day would come, we knew it all along
How did it come so fast
This is our last night, but it’s late and I’m tryin’ not to sleep
‘Cuz I know, when I wake I will have to slip away

And when the daylight comes I’ll have to go
But, tonight I’m ‘gonna hold you so close
‘Cuz in the daylight, we’ll be on our own
But, tonight I need to hold you so close

Oh whoa, oh whoa, oh whoa
Oh whoa, oh whoa, oh whoa

Here I am starring, at your perfection in my arms; so beautiful.
The sky is getting bright, the stars are burnin’ out.
Somebody slow it down.
This is way too hard, ‘cuz I know when the sun comes up I will leave
This is my last glance that will soon be memories

And when the daylight comes I’ll have to go
But, tonight I’m ‘gonna hold you so close
‘Cuz in the daylight, we’ll be on our own
But, tonight I need to hold you so close

Oh whoa, oh whoa, oh whoa
Oh whoa, oh whoa, oh whoa

I never wanted to stop, because I don’t want to start all over, start all over
I was afraid of the dark, but now it’s all that I want, all that I want, all that I want

And when the daylight comes I’ll have to go
But, tonight I’m ‘gonna hold you so close
‘Cuz in the daylight, we’ll be on our own
But, tonight I need to hold you so close

And when the daylight comes I’ll have to go
But, tonight I’m ‘gonna hold you so close
‘Cuz in the daylight, we’ll be on our own
But, tonight I need to hold you so close

Oh whoa, oh whoa, oh whoa
Oh whoa, oh whoa, oh whoa
Oh whoa, (yeah) oh whoa, (yeah) oh whoa (yeah) (yeah)
Oh whoa, (yeah hey) oh whoa, (yeah hey) oh whoa

From Our Home to Yours...

Apparently I Never Learn...

Apparently I never learn....

I opened my big ol' mouth yesterday and told people at ACH that we hadn't been admitted since December...sigh, apparently I never learn!

Technically we weren't 'admitted' but Mr.B took a downhill turn last night with laboured breathing and a random (but large) cough.  His respiratory rate and his heart rate were both up (heart rate was up do to the laboured breathing) and I have to say I didn't go into immediate panic mode (yet).  I watched him on and off through the night, listening to his lungs and heart and neither one changed for the worse.  I was certainly more confident in not taking him in due to the fact that I knew our Home Care Nurse and RT were coming first thing this morning.

I had B off his oxygen while I drove the 'big' kids to school and after the 20 min drive he was working pretty hard in his carseat.  Luci (Nurse) and Shawnee (RT) were here when I got back so they went to work listening and assessing.  Both came to the conclusion (pretty quickly) that he needed to go into Emerge.  The 'good' news was that he was still able to sat 97% off any oxygen and he was kicking and playful (typical sick Mr.B).  Shawnee tried three doses of Ventolin to open things up and ironically they did open up but then of course he sounded worse.  Shawnee blissfully called into ACH to let them know we were coming so I was confident it wouldn't be a long time in Emerge...oops.

We got to Emerge, let them know we were there (checking in at the hotel?) and then proceeded to wait almost 3 hours in the waiting room.  How can I ever convince people this little man is indeed sick when he plays and laughs all the time? ** (Of course now that I have just heard on the news that a Toddler was in critical condition after being hit by a car today, 3 hours is nothing)**

Long story short, life in Emerge, blah, blah, the initial thought was that it was probably viral and that he was sounding not too bad when the Dr examined him.  Off for an x-ray (hello Diagnostic Imaging, nice to see you all again), and three rounds of Ventolin/steroids every 20 mins.  Dr came back in to let me know that the x-ray was pretty much the same as his last one and he was kind enough to point out that Braeden will never have a 'normal' x-ray.  He was still convinced we were probably looking at an upper respiratory viral infection and asked me if I would be comfortable treating him at home with oral steroids and puffers.  YES PLEASE was my response!  To go into Emerge with a respiratory infection and get to go home?  YAY for Mr.B!

As we were getting packed up to go (HOME!) the Dr came back in to inform me that a Radiologist had viewed B's films and seemed to feel like there was either a partial collapse (lung) and/or some pneumonia present....hmmmm.  Dr said he was still confident in his 'treatment' plan and asked if I was still confident taking him home (yes). 

I was giddy when we were walking out of the hospital, Braeden was breathing easier, his little cheekies were pink (not the awful white when we got there) and I was thinking, 'yah, I can do this!'.  It's now been three hours since we got home and B's little cheekers are now pale again and he's certainly working hard again.  SIGH.  Steroids, check.  Ventolin, check.  Another sleepless night for the over-confident Mommy, check.  I'm thinking that I got a wee bit cocky since B weathered his first cold at home last month.  Am certainly not feeling so confident now.

So we watch and we wait, and we watch some more and we wait some more.  Who knows?  Maybe, just maybe Mr.B will come through this like the Champ he is but do it at home for a change.

From Our Home to Yours...

Finally Some Good News!

Mr.B helping Mommy work!

The funny thing about good news is that it also means that we don't have any answers to the questions that we were waiting for. Huh.

Braeden has come back 'normal' (the Geneticists' word, certainly not mine) in regards to his cheek scrub test for Chromosome 12p (Pallister Killian Syndrome).  Now of course as I mentioned earlier this only means that the cheek scrub test is negative, but not necessarily true.  Only 70% of kids with PKS have a positive result through cheek scrubbing and the other 30% are diagnosed through the skin punch biopsy.  Back to the decision of the skin punch or not.  There are many benefits to having the procedure done because they take the skin sample and grow it into a larger sample that can be used at a later time as well for further testing.  Great idea right? 

The biggest issues I have are that:
1) Mr.B is now aware of cause and effect, as soon as we enter an exam room he immediately starts to cry (somewhat hysterically).  For those of you personally aware of my son you know that is certainly not his regular personality.  I am trying to lessen the traumas that he has to endure simply by making other choices for him at this point.  The fact is, we are going to spend a good deal of B's life with Dr's and at Children's so I want him to have a 'happy' view of ACH, if at all possible.  The friendly faces we see and the wonderful people we meet certainly play into that but the cold reality is that it isn't all roses that's for sure!

2) It is a small procedure but still a procedure nonetheless.  It entails the Dr applying a numbing cream to his arm and then we return an hour later for the actual 'punch' removal of the sample.  Some Dr's use a stitch following the procedure but this one does not, she prefers to just apply pressure until the bleeding stops (although she did inform me that there could be excessive bleeding due to the depth of the sample).

3) It's Braeden, need I say more?  He loves, loves, loves to be in that infinitely small percentage of kiddos that don't react or behave how the typical test would go.  I'm not saying that it would happen but I am certainly more cautious with anything in regards to this little man.

Choices, choices.  What if we don't do it?  Then we don't do it.  They have completed all of the genetic testing that they can do on him to this point by blood samples.  Mr.B has been tested for anything and everything under the sun in terms of genetics thus far and we've still come up negative.  So what if we do?  Well we might just have an "answer" in terms of his genetic make-up or we might not.  The Geneticist does want to study him further to see if there is something else she can 'see' as well.

I guess what is really is is that I'm torn about the need for the Genetic 'answer'.  I understand from a medical point of view that it is a good thing, it can help us predict (ha ha) his future a bit better and it would be great from a research perspective for the Genetics Program at ACH (chances are he'd be the only child in Calgary/Alberta or even Canada with 'said' Syndrome).  Having a label gives me some anxiety and I can't quite place just why that is.  Having a label ensures further funding (not that they can deny him any with his history), and might make the process a bit easier (double ha).  And it has nothing to do with anyone else 'labeling' him (the average person won't have any idea what his syndrome is if I were to tell them), so what?  I don't know.  Maybe I like my 'mystery' baby?  I guess what it is really is that I don't know if I want to know what the (possible) future holds.  I like that we have been given the grace of living life day to day.  We have been shown that life changes, and certainly can change again, in an instant.  When it comes to B, there is no road map, we just get to be blessed with 'surprises' along the way (some great, some not so great).  I guess what it comes down to, as it invariably always does, is what works best in our lives right now?  I'll let you know next Monday what we've decided.

We also took the time last week to get B's standing frame properly fitted for him at ACH and we were even able to put all of our brilliant heads together to adapt his specialized bath seat to suit his needs.  I don't have any updated pics of the standing frame yet, I will get it back this week but I will also have to post a short video of B in the tub with the 'new' seat.  He loves it and just goes to town in it, bicycling his legs and making huge splashes!  The first time I put him in it I had to pull him out of the tub after 5 mins because his lips were blue and he needed oxygen, he'd been playing so hard!  It was so nice to see (the playing part, not the blue part).  I want him to enjoy life and having a bath is certainly one of those enjoyments.  His Physical and Occupational Therapists will be beyond thrilled when they see us next!

it's kind of hard to see but the 'ridge'
closer to the right hand side is
 his spine (you can see
 how it is much closer to the
 right side then the left) and
that his spine goes on an angle
up to the left side.

The other good news is that Mr.B has mild Scoliosis!  NO Kyphosis was seen, YAY!  The curve is so mild right now that it is simply a 'watch and wait' scenario.  While this is a huge relief it also led us to the question of, 'what the heck is the mass on his back then?'.  Braeden's Pediatrican actually put her head on her desk the last visit because he was also running a low grade fever at the time (no reason that we know of).  He's certainly a brain tease this kid!  Dr.Cassie ordered a full abdo ultrasound as well as an ultrasound of his back because after examining him she noted that he's thinning out even more (this kid has NO fat stores) and his belly is/was a bit barrel shaped (swelling out under his ribs).  So off to the ultrasound we went!  After a 45 minute ultrasound the Tech told us to wait as she thought the Radiologist would want to speak to me directly (NEVER a good thing), but 10 mins later she said we were actually good to go.  I was a tad concerned but I also know that the Rad's that work at that clinic also work at ACH so there was a good chance he was somewhat familiar with B's case (he's one of the 'water cooler' kids after all).  The biggest fear was that the 'growth' was a tumour but from what I could tell (in all my studies as a Radiologist, not) was that the mass was muscular.

His wonderful, kind and thoughtful Dr.Cassie (Pediatrician) texted me late that night (Fri), long after she should have been working, to tell me that B's urine had come back clear, no UTI (looking for causes for the low grade fever) and that the mass was/is in fact muscular in nature.  Phew.  But wait, what?  Why is B's back muscle going into overdrive when he's clearly hypotonic (floppy) through his core?  That I don't know yet, I meet with Dr.Cassie next week to discuss it.  Dr.Cassie said she'd be a lot more concerned if it were happening elsewhere in his body as well (which it is currently just the left half of his back).

So really we've got good news but no real answers.  I have a feeling that Genetics will be interested in the muscle over-growth in his back as well.  What it comes down to is that he's still our Mr.B and he's still as perfect as ever.  A little man literally FULL of surprises!!

Today I Cried

Today I cried, and yesterday, and the day before that, and before that too.  I am crying for the loss of a child that I never got the honour to know, I've been crying for his Mom, (who has been a pillar of strength throughout), and I also have been crying for the young boy's brother and his Daddy.

While it might seem that this world is a huge place but with the Internet it is now so much smaller.  I had been following a blog of a fellow Momma with a young boy with multiple health issues since birth.  Much of our stories coincide in bizarre ways and we oddly have a very similar outlook on our lives and children (faith aside).

Part of what has happened in the past weeks is that my worst reality has come to light, that we too could lose Mr.B with no notice, no real time to say good-bye before he simply becomes unresponsive one day.  Know I know many of you chastize Michael and I for the fact that we aren't in the practice of saying 'My child will live to be an old man'.  Michael and I have chosen our scientific reality and that reality shows the sweetest baby in the world with a very organ-compromised body.  On the flip side of that I think of how grateful that I will be to have this child to hold in my arms for a full 5 1/2 years like sweet Gavin.

People often tell me, (with the best intentions) that I need to cry, to let the grief and stress out.  I certainly can do that but there are also times that I hold it so very close to me that if I were in fact going to cry I am afraid that it won't stop.  Through Kate's Journey and the Leong Family's loss of sweet Gavin I have cried.  Michael questions why I feel the need to continue on reading about this family when it obviously makes me upset but I feel the need to support this Mom in anguish who is my partner in Mommy-hood and living life with our medically complex children.  I am gaining strength from her and am hoping that I will have a small portion of her grace when our own time comes to say good-bye. 

Part of Gavin's parents journey was also donating organs to possible donors and having Gavin leave life even more so than that hero he already was in his own fight.  It was a devastating loss to them when they found out his liver wasn't viable and the donor recipient was a three year old from Texas.  Kate shares here the serendipity of life of how this world works to bring so many of us together in our times of need.

It is also incredibly important to Kate and her family that the spirit of Gavin lives on in each and everyone of us.  They want people to take a moment and 'pay it forward' with such things as donations of items, donations of time, or something as simple as helping a neighbour.  So take a moment, it doesn't have to take long to simply acknowledge a fellow human and offer some kindness.

So while I might be crying, they aren't all tears of sorrow, they are tears of love and joy and the blessing that is Braeden, every single part of him.  While we continue along our own journey, our path in the dark, in search of "Chasing Rainbows", we'll forever keep Gavin's Rainbow close as well.  Thank you Kate for being strong enough to share your journey with us, I too understand the cathartic quality to writing out my emotions. With love and support, the Lousier-Hicks' Family (Calgary, AB)

If you'd like the link to Kate Leong's whole blog it is here for you, please keep in mind that this is an incredibly emotional read for the past few weeks but you'll be honoured to see this little boy shine in all of his photos and videos. http://www.kateleong.com/

Songwriters: RICHIE MCDONALD, BILLY DEAN

I can remember when you fit in the palm of my hand

Felt so good in it, no bigger than a minute

How it amazes me, you're changing with every blink

Faster than a flower blooms they grow up all too soon

So let them be little 'cause they're only that way for a while

Give them hope, give them praise, give them love every day

Let them cry, let them giggle, let them sleep in the middle

Oh just let them be little.

I've never felt so much in one little tender touch

I live for those kisses, prayers and your wishes

Now that you're teaching me things only a child can see

And Tonight while we're on our knees all I ask is please

Let them be little 'cause they're only that way for a while

Give them hope, give them praise, give them love every day

Let them cry, let them giggle, let them sleep in the middle

Oh just let them be little

So innocent, precious soul, you turn around and It's time to let them go.

So let them be little 'cause they're only that way for a while

Give them hope, give them praise, give them love everyday

Let them cry, let them giggle, let them sleep in the middle

Oh just let them be little

Let them be little