Sunday, 27 April 2014

Letting Life Guide Us

So funny thing, when I don't write posts at 2am I get more sleep!  Go figure! :)

We had a lovely Easter but it was spent on the West Coast as we packed up and did a last minute trip out as a family.  That kind of thing is a very 'Lia' thing to do but not a very 'Mike' thing so I'm very happy that he was able to make it work.  As I've mentioned before my Dad's not been well so I just felt in my heart that I needed to go, sooner rather than later.  We will go out again this summer but the thought of waiting another three months was just too much.  If I want to be honest as well, I wanted and needed to see my sisters!

B enjoys the drive!

Stacked up and traveling in style!

It was quite a feat to get all five of us out all the way to Victoria but we did it.  We did the first 12 hr stint to Chilliwack the first day, spent the night at my sister's and then proceeded out to (and onto) Vancouver Island on Friday.  We really had less than 48 hrs in Victoria but we crammed in a good visit nonetheless and the boys were thrilled at just being there (although there were a whole lot of tears when they realized how fast two days go by). 
Breathe that ocean air!

I was very happy that the boys got to spend some time with my Dad and that he even got to hold B (for the first time) for a few minutes.  We took lots of pictures and had a pretty spectacular Easter Egg Hunt in my sister's back yard on the Sunday.  I love watching all of our kids together as well, it warms the heart like no other.  My niece (who is 3) is a little enamoured with Mr.B and the two of them were playing like two peas in a pod.  Acadia was sure to keep him occupied while he was having to sit for a feed and I got a great little video of the two of them playing 'catch'.  I don't think Rafe and Rylan can ever have enough time together though, there is never enough time to cram in all of the Starwars and HeroFactory into one visit!
Bubble mania!

Honk, honk Dada!

So great to have us all there!

Grandpa Lousier and his three Hicks boys

Grandpa had just enough energy to hold me for the first time!

Partners in crime!
The hotel life

I don't know if this is going to be too small for me this summer Momma!!

Easter Bunny found us!

I LOVE my new car!

Now where are those eggs??

There is never enough Dada time

A good find!!

We headed back to the Mainland on the Sunday afternoon and drove straight into Mission to have Easter dinner with Mike's family.  It was only a four hour visit but we crammed a good deal of eating, playing, and fun into those four hours!  Our boys don't get much time with their cousins so they ran around and around.  It's great having all four boys (our two oldest and our nephews) all within 3 1/2 yrs of each other so that they are all close in age and share many similar interests.  Both Jacob and Nate are so very gentle and caring with Braeden as well.  They were both so sweet to him and almost as protective of B as his own big brothers!
The amazing time of us being all able to go (first trip out as a family in 8 yrs)

Auntie Ang telling me secrets (and letting me make a heck of a mess of her table cloth)

My Uncle Scott

The Hicks boys

5 Hicks Grandsons!

Making Grandma Jean chase me!

Loving the feeling of the trampoline!

Grandma Sam helping me get my jump on! (Auntie Ang's Mom)

Three generations of Hicks!

We spent that last night in Chilliwack and drove home on Monday morning, putting in another 12 hrs to get home.  What a trip!  So much stress!  Was it worth it though?  Hell yes and would I do it again?  Well maybe not this month but in another month sure...well maybe not for only five days (three of those travel).
Homeward bound!

On the ride home B started to get sick and I ended up doing some pretty acrobatic moves in the middle of Roger's Pass in order to vent his g-tube (not many options to pull over in the mountains).  He just stopped being able to tolerate his feed any longer so I stopped trying to force it.  By the time we got home to Calgary that night he was already starting to cough...sigh.  It was a long night and the next morning I got our ACH bags packed for the 'just in case'.  It was also no wonder when both of his big brother became sick in the following few days either (and Daddy too).

His HomeCare Nurse and RT came by Monday and both agreed that he was 'on the fence' about needing to go in.  It hadn't even been a full 24 hrs at this point of the illness so I held off. 

On Tues I knew I had to take him in.  His work of breathing had increased as did his cough.  I was hoping (fingers crossed) that the Emerge Dr would be okay with giving us a round of Dex (oral/g-tube steroids) and would send us home again.  That's pretty much what happened thankfully!  I did push for an xray though (which is ironic for the number of times I've fought against not getting yet another blooming xray!).  If I was going to have him home I needed to know how bad it was.  The lungs themselves sounded pretty clear but his xray came back pretty much unchanged from March when he was in with his three viruses.  The right lung took a beating during that bout and it was still looking the same.  I was still confident bringing him home and confident that we could push through this one at home.

We've managed to stay home (now that it is the weekend) but B's certainly not any better.  His energy levels are still 'okay' but he was miserable on and off for the last few days.  He is still coughing a very wet cough and is needing his ventolin (5 puffs every 4 hours) and his inhaled steroids.  He's pretty darn wheezy as soon as he starts to crawl but I'm proud of him that he knows enough when he needs to slow down and take a break to catch his breath.  It is however a whole lot more stressful weathering an illness at home then it is in ACH in many ways.  Mainly because I have to pay attention to his breathing, resp rate, heart rate, work of breathing etc. 24/7 and contrary to popular belief (mine) I don't actually having any type of medical training!

We are off to the GI clinic tomorrow morning to review our GI issues and then see his Pediatrician tomorrow afternoon to check out the lungs.

On the exciting news front we finally got B's new sweet ride, his amazing wheel chair!  He is only one of two kids in Calgary with this chair (the other being our buddy Sawyer who was B's PICU neighbour when they were small) and it is great!  He seems to love being up as high as he is and I think that we'll get a whole lot of use out of it this summer when we finally get a round of nice weather (that stays).  The only downside is that it takes up my whole trunk of my van!  We've just got some adapting to do.

Not too sure at first (it was past nap time and we'd been there awhile)

Kinda comfy

Now you're talking!  I've got a tray too!

I'm thinking it's pretty cool!

On the other great news front is that we've been discharged from the Thrombosis (blood clots) Clinic.  They've been following B since his strokes when he was only a few months old and they are now confident that it's not a genetic condition.  He's also had several major surgeries since then and none of them have resulted in anymore clotting issues.  It feels pretty damn good to cross one of our clinics off the list!!!  We are now down to only 21 clinics following B, only!

B is getting stronger each and every day and his swimming time at ACH (in their wee therapy pool) has paid off immensely.  His core strength has changed dramatically since we started attending the pool, so much so that at the seating appointment for his new chair both Al (Rep) and Danette (Seating Clinician) were amazed.
Splashing fun!

I love my pool time!

He is also making more sounds vocally and is consistently asking to be picked up (by humming 'Up, up Momma' and tapping on my leg.  Mr.B is also doing more signing and is getting more confident in using them.  What amazes me the most (well there's more than one thing obviously) is that he HUMS tunes.  He can hum the whole song of 'Twinkle Twinkle' on demand (as well as a few others) and he does it relatively in TUNE!  I knew this child was moved by music but man, it is a part of him without a doubt!  Unfortunately we've been missing our music classes with Sarah at Rotary Flames House (due to B's nap time) but he's obviously getting enough musical input between myself and Justine (and the big boys too).

Sooner or later we might just see some real Spring around here (it snowed for 14 hrs straight yesterday) but for now we're just happy when we can get outside.
Ferret tickles

Handsome Dr!

Thinking the ferrets were pretty cool!

Rafe getting in the ferret snuggles

We're trying to sort out our summer plans (which will hopefully include the West Coast for 2 weeks) but arranging B's life that far in advance is always a risk.  It is also harder and harder to travel as B grows because his equipment and the need for more things grow as well.  We're pretty much at the point where we've out grown the ability to just sleep on floors and couches.  If anyone owns or knows anyone with property for rent on the West Coast (anywhere on the Lower Mainland or on any of the Islands) for a very reasonable price (does that exist?) then please let me know! 
Our schedule can even be somewhat fluid if needed!
Just a few of my blessings in life

From Our Home To Yours...