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

The Long Road to Further Surgeries?

We got a shiny new piece of equipment (or furniture?) in our living room this month.  B's  Buffalo standing frame has finally come in!  It is an impressive looking piece of equipment (kind of looks like a torture device) and it takes some getting used to put him in it (and out) but B loves being upright and more at his brother's level.  Unfortunately we also found out that the rep that came into our home to set it up didn't do a stellar job (there a few key mistakes) so we have to have it taken to ACH this week to have it adjusted with his Physical Therapist present to ensure it is done correctly this time (frustrating).  I won't gripe about this but I am certainly annoyed about it that's for sure!  The purpose of the device is to get Mr.B on his wee feet and legs and get them used to having pressure on them.  We can adjust his angle and therefore adjust the amount of pressure he feels on his legs/feet and it will hopefully inspire him to want to put some pressure on them himself!

I've come to the conclusion that I'm not very patient at waiting, I'm too used to (spoiled by) life 'in' the hospital in which you get immediate (mostly) answers to any testing you have done.  We are in the process of waiting for a couple of different things at the moment, a genetics test (which we'd have to wait for regardless), a new Opthomolgist and some spinal x-rays.

We had a visit to Genetics two weeks ago for a routine check-in and follow-up.  I went over anything that is new in the past few months (takes awhile) and then the 'confer' and decide if there is anything new to test for.  We've had so many genetics tests done that I can't even remember them all at this point.  The Dr said herself that she was surprised at the tests they've run (without an answer among them).  The funny thing about the genetics is that I've just come to realize that B is B, with our without a diagnosis which is why I was surprised at how stressed out I've felt with them looking into a new syndrome.  Upon review, the Dr decided that she wanted to test for Pallister-Killian Syndrome, they figure there are about 200 cases worldwide.  Interestingly enough it involves the chromosome 12p, which is also responsible for ALS, the disease that took my Grandmother from us at an early age.  I can see how she can see him fitting into this one syndrome but there are still discrepancies (of course).  She informed me that she wanted to take a skin biopsy (I didn't think they were doing any further testing that day) and I asked what was involved with that.  She informed me that they do a 'punch' of the skin and then in turn grow it into a larger sample for testing.  Torturing B with an unscheduled procedure (I wasn't mentally prepared) wasn't my first choice so I asked if there was another option.  She informed me that we could do a cheek scrub in which they insert a 'wiry' brush into the mouth and take a sample (scrub) of each inner cheek.  I was a bit annoyed that she'd not presented me with both options initially, I would certainly rather a cheek scrub over a biopsy of the skin.  She did go on to explain that the cheek biopsy isn't as conclusive as the skin punch and that if it came back negative she'd like to still proceed with the skin biopsy (lovely).   (This is not a test that can be done by blood as it doesn't present in a blood sample)  I became instantly stressed about the results of this test, I'm not sure why.  It would be positive to have an 'answer' or a diagnosis but on the flip side it doesn't change anything with how Braeden will be treated medically (or emotionally).  It will give us insight into what things we might need to look for in the future.  I guess part of it was that I had kind of given up on finding a diagnosis and just came to the conclusion that he simply is Braeden (or had Braeden Syndrome).

We had a routine exam scheduled with Opthomology for May but I asked if we could move it up to April due to B's eye lids getting more droopy.  We've noticed that his eyelids (the left especially) are getting increasingly droopier over the past few months.  Droopy eyelids can be due to a genetic syndrome but I think partly they are also due to his strokes.  We saw our routine Opthomolgist but she informed me that she is a retina specialist and therefore can't report on the eyelids.  She let me know that Mr.B's coloboma (key hole shaped pupil) is doing well and shouldn't be affecting his vision (which is great news) but that we would have to be referred to a new Pediatric Opthomologist as well as an Orthopist (an eyelid specialist/surgeon, conveniently there is a married couple that shares these roles).  The Dr suggested that we might be able to patch B's right eye and therefore forcing his left eye to work harder and open up a bit more but chances are we are looking at eyelid surgery in the future.  They don't generally worry about the eyelids drooping unless it is covering more than 1/2 the pupil (which B's left eye certainly is most times).  So two new (more) Specialists to add to our roster.  We see the Orthopist in a month so we'll see what the process is after that if they'll do some patching or recommend surgery.

The biggest weight on my mind these days however is the 'unknown' about Braeden's back (spine).  Mr.B's had a 'lump' on his left lower back for over a year now and it's been looked at on more than one occasion as well as ultrasounded.  The thought initially is that it was muscular (or rather lack of muscle tone) causing it and was only really noticeable when B was bent forward.  The lump has now grown rapidly in the past two months and is very noticeable in any position and I'm almost thinking that it could be partly responsible for our lack of sleep (pain).  We can see Mr.B's back changing as well as his right rib cage (angular now instead of a smooth curve) and it is scary.  I know it is probably due to the fact that he is growing rapidly and it is now more pronounced.  The initial thought (without the test results) is that it is either Kyphosis or Scoliosis (OR both).

Congenital kyphosis occurs when the spinal column develops abnormally before a baby is born. Several vertebrae can be fused together or the bones can form improperly. Growth can cause the kyphosis to get worse. It's important to check children with this condition for other orthopedic problems and heart or kidney defects.

The term "congenital scoliosis" refers to a spinal deformity caused by vertebrae that are not properly formed. This occurs very early in development--in the first six weeks of embryonic formation and often before the mother knows she is pregnant, and the cause is not known. Congenital scoliosis does not seem to run in families. Genetic studies to date have not yielded much evidence that this condition can be inherited. Although congenital scoliosis is often discovered during the infant or toddler period, in some children it does not appear until their adolescent years.

Needless to say, we are more than a little concerned!  I took B for some spinal x-rays last week and we should have the results tomorrow when we see his Pediatrician, Dr.Cassie.  When we went for the x-ray the tech said that they'll do a full spinal x-ray (laying on his back) and if needed they will do side pictures (all I could think is that "you'll need the side shots too").  Sure enough side pics were requested as well and the tech took one look at the first shot and asked if we'd been tested for Scoliosis.  She also mentioned that the Dr might want us to get another ultrasound done if there is soft tissue involved.  I'm not sure what that means at this time, I can hypothesize out the wahzoo but won't be any closer to an answer.  I am looking forward to hearing the test results tomorrow to simply stop my mind from going full tilt worrying about it but am also terrified of what this could mean.  The ironic thing with Kyphosis is kids with the congenital form also often have congenital defects of the heart (check), kidneys (check) and the GI tract (and, check). 

Worst case scenario (I think) is that we are looking down the road at one or possibly two surgeries (spine and eye lids).  I often wonder what other wonders Mr.B is 'hiding' in his little body that we'll discover one day.

I am certainly feeling a little stressed these days!  I am incredibly fortunate though because Calgary Family Services has sent me a very energetic and sweet 22 yr old to give me some assistance and hypothetically let me get some rest (the rest part hasn't really happened yet because someone might be a bit of a control freak...might be me...just sayin'). Ashley got a crash course in Mr.B last week however when he had a major reaction to a new formula trial and wouldn't stop retching as I was driving.  After pulling off the road and venting him twice I pulled back on the road and it happened again 30 sec down the road and Ashley jumped in the back of the van and vented him the whole way home so that I could drive.  What a trouper!  She was a bit terrified I think and a wee bit scarred by it but she showed great initiative and confidence (who needs medical training??)!  Please be proud of me though, not only did I ask for help but I am trying to accept it!  The sad part is I have to give her back in a few weeks but am hoping that my house and life might be a bit more organized at that point AND who knows?  Maybe I'll know what it feels like to get a few hours of consecutive sleep??

Our Easter Miracle, We Were ALL Home!

Happy Easter Everyone! 

We had the most WONDERFUL Easter this year!  The weather was 'spring' and gorgeous, we had fun watching the boys find their eggs and play "Skylanders", we had my in-laws here from North Vancouver for the week, we ate turkey and lemon cheesecake but truly the miracle of it all was that we were all under one roof for our first holiday!  Mr.B got to spend an entire holiday with us (lucky him?) and it was so fantastic to have all my boys here with us.

March was a busy month (I think that is the theme of my life) with me still not getting much sleep.  We are still trying to figure out B's night time needs and have ruled out seizures, apnea and heart rate and it seems like it might be a sensory issue.  We (as I have had much help from our wonderful Social Worker, Lisa Parish) have finally convinced FSCD that I am in need of some help!  I might just get some sleep one or two days a week!

Braeden is getting stronger each day it seems.  We've had a rough patch of illness(es) come through
the house and B has weathered through them all.  I've had Strep throat, sinus infection, ear infections, Shingles, and a head cold all within a month...I am thinking my immune system has realized that I don't sleep anymore or something!  Both big boys had a nasty flu/cold that has knocked them down for two weeks as well as Strep.  Mr.B (the Amazing) has come through all of it with a slight cold/flu that he was able to weather AT HOME.  It was simply a common cold that had him in the PICU for 10 days on a vent last October so to say life is stressful around here when someone is ill is an understatement.  My confidence has seemingly soared with this new achievement, I am finally feeling like we might be moving forward.  We are now three full months out of ACH without an admittance (shhh, not to be said in front of Mr.B) and we can see that he is stronger.

B continues to amaze all that know him with his good nature and sweet smile and laugh.  He is spending a good deal of time on his hands and knees these days and is able to reach for a toy while in this position.  He needs frequent breaks but is happy to simply try again a few minutes later.  He is so full of life and energy that when he starts moving we are all going to be in trouble!  I am really hoping his standing frame will be arriving here in the next few weeks so that we can get him upright and on his feet.


It seems as though Spring might actually be here for those of us in Calgary (for now as it is supposed to snow this week) and the boys have been out riding their bikes like fiends!  It has been a wonderful visit with Mike's Mom and Dad here, they've been keeping the big boys very busy for their Spring Break week.  Unfortunately even Cold FX couldn't keep Jean from getting our virus but she's fighting through it like a trouper!

We did get to accomplish another few "First's" for Mr.B as well this past week!  He got his first 'real' haircut (by the fabulous Melissa at Beaners) and he got to go out to his first restaurant dinner out!

 
We joined a few other families at Rotary Flames House last week for their monthly Family Night and the boys had a blast building project that were brought by the Home Depot Team.  It was a loud night but they had so much fun and Pappa (Mike's Dad) was in his element helping the boys glue and nail their projects.

Cross-Eyed, Sleep Deprived Mommy

To start off Radiothon was a HUGE success, raising over 1.8 Million Dollars for ACH!  Thank you to those of you that donated to our page, tuned in or just gave us some support.  The interview itself is a blur, I can't even remember what was discussed to be honest with you (aside from the basics of B obviously).  I am hoping that the radio will forward me a copy as they said they could because I'd certainly like to hear it.  Didn't think about the inability to throw a tape in the tape deck and hit record till the night before the interview!  The great thing was hearing everyone else's stories and journeys as well and knowing that we are only one of SO many families that ACH helps each and every year (day!).  Torin and Rylan both did get a chance to speak 'on air' as well (kind of) and I'm pretty sure B even made a bit of noise.  Thank you so much to my wonderful friend Lorna who attended the interview with me to keep an eye on the kids for me and offer her moral support!

So I know that it's been a very long time since I've blogged again and it's certainly not that I don't want to blog anymore but I have to tell you, I've not had 'real' sleep in so many months now that it has caught up with me big time.  I'm in the process of completing antibiotics for Strep, Ear infections and a Sinus infection all topped off with 'flu' symptoms.  The most amazing part of it?  It all hit me within a few hours, from 'okay', to 'can't move because I'm shaking so bad' within hours is not fun.  Apparently I'm NOT SuperWoman, who knew?? 

I do joke but in reality Mr.B has been keeping me up all hours of the nights since November and it is awful.  B can be up anywhere from 5-15 times in a 6 hr period and it doesn't make for productive brain function for me.  There are simply days where it is all I can do to 'get by' without falling over.  We had a 24 hr oxsymmetry test done (tests his oxygen saturation for 24 hrs) and it was 'okay for the most part'.  We've done a 'sleep test' (which was awful to say the least), picture a hospital room with a crib, bed and nowhere to go till the test is over.  That's not the bad part, the bad part is there was NO sleep for me that whole night, B has one of his 'up every 10-20 min' nights and when they came in to put the c-pap (breathing apparatus) mask on for a trial period B was not happy, back arching, screaming, not happy.  We still only have the prelim results from the sleep test but it too is 'okay'.  He is de-sating(oxygen levels drop) at night but is coming back up within a reasonable amount of time.  What's left?  Well lots but the latest thing we've done (just last week) was another EEG (brain scan) to check for seizure activity while sleeping.  We had the EEG done on Tues and we were supposed to meet Dr.Mineko for the results Weds but I was already deathly ill and couldn't meet with her.  Michael spoke with her on the phone however and she doesn't see any major signs of him 'seizing' during sleep either.  I do meet with her this week to continue the discussion and because she wants a chance to examine him again.

All this is good news, obviously, but also not so good in the lack of sleep department.  When I say he's waking up, it isn't for extended periods of time (for the most part), he is seemingly looking for comfort so is it simply all of the hours, days, nights and months of living at ACH that finally caught up with us?  I don't know if it is that simple as there are times when he is 'out of it' or crying with a 'pain' cry but some answers would be nice.  After all this little man has been through it is only right for me to lunge out of bed and go to him without question, but I can't keep it up (oddly enough).  Everyone keeps telling me that we should use Rotary Flames House so that I can get some sleep but that comes with it's own issues.  If it is simply (partially?) separation anxiety how will it help to put him in a strange environment with strangers (albeit wonderfully kind ones)?  Not to mention the stress it will add to Torin because he'll want to be with Braeden at RFH and stressed to the point of not sleeping himself because of that (trade one sleepless kiddo for another?).  I don't know what the answer is at this point (if there is one) but that is the main reason that I've not been blogging, I've not been getting more than an hour and a half to two hours of consecutive sleep a night.  When you are up three times in one hour you don't get much 'real' sleep between that.  My body is also so in-tune to Mr.B now too that when he does sleep I can't get into a deep sleep because my body is prepped to wake up several times.  Frustrating and exhausting.  It's also not really fair to the three other males in my house that have a 'crabby' Mom (wife) so change would be good!  I am trying really hard to take care of myself now (pat on the back that I've even put myself in the line up) and have cut out sugar and wheat out of my food intake and am writing a new blog about it to keep myself accountable for it but the lack of sleep seems beyond my grasp at the moment.

Another 'odd' thing is that been going on is Braeden's fontanelle is constantly low.  He's not at all dehydrated, in fact I've been giving him extra water for weeks to see, but it remains noticeably low.  His Paediatrician thinks it could be that the extra fluid in his ventricles (middle of the brain) has come down and the brain mass is now smaller leading more room in his skull.  If in fact there are changes in his brain I'm certainly interested in looking at another, updated MRI to see what we are looking at.  When we see the Neurologist on Weds she should have a good idea of why or at least what we need to look at.

The last thing we are checking out (for now) is that B's spleen is considerably enlarged and he's not gaining much weight.  Your spleen generally sits up inside your rib cage on the left hand side but B's is so large now it is down to the level of his belly button.  It was mildly enlarged in Jan but has proceeded to increase in size over the past month.  If this has something to do with the waking I don't know but it could also have a more sinister side to it that I won't even bother hypothesizing at this point as there is no point until we have more testing done.  The good news is that his CBC levels (complete blood count) are low (platelets) but still within the normal levels of low (for now).  We had an ultrasound scheduled for this morning but it was cancelled last minute and rescheduled for Weds.  Hopefully we'll get some much needed answers from that or at least know what other tests are needed.

On a happy note, we celebrated our oldest son's 8th Birthday in January!  When I see just how far Torin has come in a few short years with therapy and love it makes my hope for B blossom.

We also ran another successful Blood Drive in Jan with 9 Donors and we'll continue to donate as often as we can with our next Donor Day being March 16th at 9am (if you can help us by being a donor that day please let me know!).

So the good stuff now:

Braeden got fitted for a standing frame in January and I was shocked once he was in it to how long he is!  He was a bit unsure about the whole frame contraption but his won't be here for another few months anyhow.  B did stand supported (weight bearing) once while I was holding him on my bed so he just needs to get used to the sensation of the weight on his feet.  He certainly appears to prefer being 'up' where the big boys are!


He is getting more used to his hearing aides now which is great.  He's still not forming words but is certainly chatty to anyone who wants to listen!

Mr.B is has now officially 'signed' his first sign language sign!  I was yelling so loud that Michael came in from outside to see what had happened.  B signed 'all done' (hands crossed and opened in front) when he was asked if he was all done.  The funny thing is that he didn't (wouldn't?) do it again until today when he did it on two separate occasions! (Mike is still skeptical as he's not seen it)  I am so impressed with him as he's still not waving 'bye-bye' but is able to process a sign?  He is also now finding his toes to play with (and his g-tube which he loves to unplug and make a huge mess).

Another massive achievement is that he is officially off oxygen during the day as of last week (unless napping or out of the house for long periods)!  We are finally back to where we were before he fell so horribly ill in October!

BUT the most incredible and amazing thing is that he is now confidently rolling over and getting up on his hands and knees for a few seconds.  I can't tell you how astounding this is (I'm getting choked up writing this), we didn't know if B would ever have any motility at all, let alone the ability to crawl and possibly walk? WOW.  This kid is a constant source of inspiration and amazement!  I think of all the time and energy I wasted that I put into being worried about T crawling late or walking late and what that meant (Ry then of course for early for both of them).  How silly that we have a timetable in our heads that we feel our children need to follow (of course I know the time lines are there for kids that could have issues) but for Braeden he's got all the time in the world to do as he pleases and I'll be darned, he's gonna do just that!

As Feb comes to a close and the days are slowly getting longer it's easier to greet the day with positivity and hope.  Spring is still a long way off (a few more months at least) for those of us in Alberta (as the snow falls outside) but I know that those of you on the West Coast of BC are already looking a blooming flowers.  With Spring brings new hope, new growth and new possibilities!

Radiothon! Listen in Feb 7th at NOON!

January has come and gone already and we are now one week into February!  Mr. B will be 15 months tomorrow! 

How do you say 'thank you' for saving your child's life five times in one short year?  We've got an opportunity to give back tomorrow but participating in Radiothon at ACH.  I was asked share Braeden's story and of course I didn't hesitate to say 'yes'.  I've set up a fundraising page in B's honour to help the cause in any way we can.  I was so honoured when they called to ask if we would participate by doing an interview on the radio and sharing Braeden's story.  For those of us that live in Southern Alberta we are SO lucky and BLESSED to have a hospital and teams of doctors, nurses and volunteers to care for our kids.  Whether you have a kiddo that is a 'typical' kid that may need a few stitches one day or if you have a kiddo that needs Cancer treatment, this hospital will care for you (and us)!  I can't say 'thank you' enough to the staff and volunteers at ACH, but I can take some action and by participating and bringing in more donations. 

For those of you looking to listen 'live' to us well be on air at Noon tomorrow (Feb 7th)!  (you can listen online)

I am listening in live right now writing this and I have to tell you I am a blubbering mess.  I don't know if I've cried this much in a long, long time. So many people have asked me over the past year how we do what we do but listening into Radiothon makes it so clear to me that we are not the only ones.  Braeden's story might be a rollercoaster ride but there are so many more out there, parents like Michael and I that have been blindsided by the early, traumatic arrival of a child or a life threatening trauma, etc.  By donating or becoming a "Miracle Maker" (for .60 a day or $18/mth) you are helping all the families like us save our children and give them a better life!  You are also 'buying' a piece of hope for your own children or grandchildren!

 Thank you, thank you, thank you Alberta's Children's Hospital!!


Birthday Boy

Two weeks

 

First Hold (right before he was shipped out for his heart surgery)



Such love through all the suffering

14 months!



Always a Happy Boy!