Doing Our Part...

Another three week gap, I know, I know!  My phone is ringing and I've had people stopping to see if we are okay.  We are okay (thank you for asking) it is just something about this time of year that I find it hard to find the time to sit and write.  On the good news side of things, you're about to get a photo bomb here! :)


Some Araya lovin'!

I'm also embarking on a brand new adventure, I'm trying to take care of myself!  It's a bit of a shock to the system, but hey, at least I'm trying!

Doing some physio, heavy lifting!

We are officially one month free of an admission!!!  Yahoo!  It feels as though it's been an non-stop, ongoing admission after admission since June.  I think we ended up with 10 in all in the last 7 mths which is nuts!  We've been just enjoying life at home (although of course we are still at ACH multiple times a week for appointments).

The second half of January was big month for us with

Water Baby!
 

appointments and starting new things!  Mr.B started water therapy over at the ACH therapy pool (a wee indoor pool for Special Needs kiddos).  As we all know, B LOVES the water and he's certainly enjoying the class!  He's not at all thrilled with the 'group participation' part of the class but he's happy as a little fish to 'swim' with Justine.  He's even got an amazing little froggy kick going on.  I can already see a difference after only 4 classes in his strength!  It's pretty astounding how doing the water therapy combined with therapies at home how much he's grown in strength.  Wait for it...B is now able to STAND for about 10 seconds (while his little legs shake like mad!) while holding onto the edge of his crib.  It is so heart wrenching to witness!  I even had him 'stand' at the edge of our dining room table tonight for a few seconds and we could see the light bulb go off in his head when he realized he could see what was on the table!  Hilarious!  And I already thought he was into everything...  People keep saying he'll be walking soon, and I love their enthusiasm, but he still has a great deal of strength and balance to build before walking will happen.  I have NO doubt in my mind that he will in fact walk but he'll do it on 'B' time.


I'm STANDING!!!!!  This is HUGE!!!!!

Crammed between a purse and a feeding tube bag...but I'm sitting in a cart!!

Big sitter!

The other outstanding news is Mr.B's language is taking off!  He is consistently saying 'Hi', 'Mama' and 'Bye-bye'.  He's not using thing contextually just yet but hey, he's SPEAKING!  When you have a child with an almost paralyzed vocal cord that is now making real words, anything is possible!  As with the physical, he's gonna do it all on his own timeline.  He is absorbing sign language more and more each and every day he works with Justine and starting to be consistent with some signs as well.   I believe SO strongly in the power of teaching all children sign language, it was both Torin and Rylan's first language.  Being as T was pretty much non-verbal until he was 4 1/2 it was started out of necessity but with Rylan it was used because we were using it with T and it worked (and they are only 1 1/2 yrs apart in age).  The ironic thing however is all of the sign language that I learned with/for the big boys was all around food for the most part!  How hard is it to communicate with a two year old what he wants to eat?  Sign language took all of that frustration away for us!  Now here I am with a boy who is completely g-tube fed and has no interest in food!  Thanks universe!  Ah well, it is just as good for me as it is for B to learn new signs.  Good thing for us Justine is a qualified Sign Language Interpreter!



Working hard in my standing frame!

We did also get into see the Sleep Physician (finally) this month but it was somewhat disappointing.  I don't know what I was expecting but I was sincerely hoping for some sort of 'coping' strategies or something.  From our two overnight sleep studies (that are done at ACH) we know that he wakes every 45mins to 1hr and that he has mild apnea (yay).  The biggest problem is (and has been for over a year now) is that there is no reason for his waking that we can find.  I found myself trying really hard to not get defensive and listen to what she had to say but it was hard!  He's not a 'typical' kid that doesn't sleep, he is a child that has had to endure severe traumas and never ending pain.  I can't let him 'cry it out', he'll not only turn blue but also start to retch (he can't vomit remember) and then I've gone from a crying baby to a child that needs medical intervention.  I could go on and on about his sleep habits and lack of any kind of rhyme or reason to it all but it would take all night.  We are coping, I do have Justine's help for this exact reason so I can get some sleep during the day when she's here but it's certainly not ideal.  Nevertheless I will do as she asked (the sleep Dr) and write down what I do each night for three weeks, not B but me.

We also saw the Eye Surgeon in January for our surgery follow-up to which we got (dripping with acidic sarcasm) the news that he'd need a second eye surgery. Wow, shocker.  I enquired again to why he didn't do the 'other' procedure (that I swear we discussed) instead of this one that he did do but he again reassured (not) me that the other surgery (that he now needs!!!) is only ever a 'Plan B' surgery.  SIGH.  I am in NO rush to get another eye surgery for him as long as his left eye stays open as much as it does and the vision doesn't start to get affected or the eye gets 'lazy'.  So very frustrating.  Of all the times I didn't have a second person in the initial consult with me...

The last bit of January was also a time of great reflection.  I was asked to speak about an experience in the NICU to a group of people.  It is part of the Patient and Family Centred Care at ACH and the series is called 'Patient and Family Rounds'.  They generally have a Patient/Family member and a staff member talk about an experience.  Since Trish (one of B's Primary NICU Nurses) and I still have a great relationship I asked her if she'd be willing to speak with me.  Luckily she agreed!  Before our talk though I took some time to reflect back on the NICU part of our journey and re-read some of the early blog posts.  IT WAS SO HARD.  I find it hard to go back to that time of profound helplessness and fear not to mention how in shock we all were by the events taking place.  There is simply nothing (not even a 5 day NICU stay with our oldest son) that could prepare you for a NICU stay with a critical and extremely complex preemie that no one could possibly diagnose.  It's not like B just had one thing, it was one thing on top of another, on top of another, on top of another, and so on.  The fact that he's still undiagnosed gives you an idea of our helplessness at that time.

This picture now holds even more meaning and emotion for me...

I've also known for a long time now (but didn't back then) that B was not expected to make it.   That didn't come as a surprise when I found out some months later, the child was Septic and with Meningitis (not to mention the strokes, seizures and so on).  We had our discussion about how much medical intervention we were willing to take because his organs were shutting down and they were prepared to start dialysis.  What I didn't know is that one of the photos of our journey that I cherish so much now has a completely new meaning for me.  It is the photo of me holding B for the first time that he went Septic and I was terrified to hold him.  He was in agony due to all of the swelling in his stretched out little body and attached to more wires/tubes then I could count.  I didn't really want to hold him that day, I was so scared of just causing him more pain but I relented when Trish pushed me to hold him, insisting it would be good for us both.  What I found out last week is that both Trish and his other Primary NICU Nurse Suzie fought for me to hold him that day because they didn't think he'd survive and they wanted me to have the time to hold my sweet, precious child a few more times while he was still alive.  Doesn't that take your breath away?  I am SO thankful that I did hold him that day and it gave me back some of my confidence that I was in fact his Momma and that he was mine.

We did make it through most of the talk without too many tears although I certainly teared up on more than one occasion.  Patient and Family Centred Care has become a burning passion of mine, it needs to be heard and it needs to be put first and foremost in our medical system.  It is the reason why I sit on the Networks with Alberta Health Systems that I do, I am driven to try to make a difference for all the families that will follow in similar footsteps to ours.

I'm very blessed as well to have been asked by Trish to speak in March to a group of NICU Nurses again about this topic.  Trish and I will again present as a pair and talk about our journey with Mr.B in the NICU.

We also got to go out and put in the donations that Torin collected for his 9th Birthday for Alberta Children's Hospital.  I'm SO proud of both of my boys for their willingness to raise money for something that they both feel is important!

There are a couple of important things happening this week around the world as well.  This week is not only Congenital Heart Defect Awareness but also Feeding Tube Awareness.  Well since B has both (and both are life threatening/saving issues for him) we decided to go all out and do a Rockin' photo shoot to raise awareness.  We also created a short video vinette for TinySuperheroes (the makers of the AMAZING red cape you see in the shots) to raise awareness for CHD as well as a photo contest for Mended Little Hearts (click HERE to vote).  Justine and I had a great deal of fun getting B's haircut into a Mohawk (as you can see he wasn't thrilled) and spraying it red.  These are photos that I'll cherish for all time!  I had to include so many because there are just so many to choose from!



Not happy about this haircut thing!!

The other part of reflection that has come for me is that we just finished our Radiothon for ACH this past week.  The people of Calgary (this GREAT city) and surrounding areas of Alberta raised over 1.95 MILLION dollars in the three day Radiothon.  That means more state of the art equipment for our amazing hospital among other things.  It was a different experience being on the 'outside' of it this year (we were a part of it last year) but wonderful with hearing other's stories that we've gotten to know.  It is a three day cry-a-thon for me but it is empowering as well!  I am thankful for so many things but being Canadian, being Albertan (I was actually born in Calgary although I grew up on the West Coast for the most part) and living in this great city of Calgary with the best care in the world only a 10 minute drive away from us.

 

From Our Home To Yours...