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

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.