Tuesday, 10 September 2013

Musician in the Making

Not often I have time to post not one but two postings in a day...

Checking out the rain drum with Pappa

Such noise it makes!
We got to attend our first music class today (Mr.B, Justine, Grandma, Pappa and I...we were 1/2 the class!) over at Rotary Flames House.  I thought B would be so excited, and he was but he was also a bit unsure about it all!  Sarah, the Music Therapist from ACH, is running 7 classes for the kids of RFH to attend.  It will be a lot of fun to have B in something interactive and it's always nice to meet other RFH kids and their families.  The amazing thing was that Sarah told us to tap our hands on our knees and B actually started tapping his hand on his chest in time with me...AH-MAZ-ING!  He didn't keep it up for long but he did it and it was so very cool to see it happen.

B's first piano lesson with Justine

The plan this morning was actually to send B home.  He's back up on his full bolus feeds (five small feeds with continuous overnight) and he's tolerating it well.  The crummy part is that he's still 'positive' for the Entero Rhinovirus so he's still 'technically' on isolation.  His energy levels seemingly have come up also over the last 24 hrs so it's good news!

Wearing his big brothers head
phones and not too sure about
it all!
The plan to send B home was a good one but it got changed till tomorrow because we decided, since he's here and all, we'll just shake things up and try something new.  We have moved B to a new, Complete formula, one that's made with actual food...shocking, food.  Since his guts are SO sensitive he's been on an amino acid based formula for quite some time now but he's also almost 2.  I have heard from a few different dieticians that they've seen great improvements in kids with GI difficulties by going to food-based eating.  Sounds like a no-brainer to some of you I'm sure but keep in mind that Mr.B is exclusively g-tube fed AND he now has a g-tube that is permanent (for the next few years) and can't be easily removed or exchanged.  Why is that an issue?  When you put 'food' through the g-tube you have to flush the tube after with water to 'clean' it out and it can get quite gucky.  B already has a small stomach so we need to be careful at how much 'food' we can give him vs how big of a flush he'd need afterwards to clear it out. 

Brothers helping me take our B for a walk outside
The other things about going with a 'food' diet is that 1) I'd need a top of the line blender (we're talking at least $700) and 2) I'd need the time to make all the food, process it in the blender and then separate, freeze...uh, I'm tired just typing it all!  Now I'm not opting out of that, and yes, it would certainly be the best he could eat but we are trialing a pre-made food-based formula first.

Now THIS is a funny face!!  Love it!
The major issue (and why we've not attempted to try it until now) is that it is a milk-based formula and the thought was that some of B's issues with other formulas point to a milk allergy.  His GI is confident that it mostly likely isn't a milk intolerance per se but just that his tummy is that sensitive.

I am happy to say that we are now two bolus feeds in and NO RETCHING!  This is a very good sign! 

The plan is to go home tomorrow (fingers crossed) and continue on this path.  I'm feeling a bit excited (don't tell B!) that we might be able to start getting those intestines happier.

We also got a couple of visitors late last night as well to make life a little bit nicer...the in-laws are here for the next few days so the kids are very excited! (insert: "but Moooommm, Pappa said....").

We also got to do something very cool yesterday, I got to watch Rylan donate his Birthday money to ACH.  They do the coolest thing for donors!  They let them print their names on a heart sticker, stick it on the wall, write their name on a huge check and hold it up for a picture.   They ensure that the kids feel as important as they are and I am repeatedly impressed by this hospital and this is no exception.  I am so proud to be a parent of such giving, kind and generous little creatures!   

Our latest 'addition' to our family, Justine
So life goes on, a bit more each day and B's getting stronger seemingly right before our eyes at times.  I have no doubt in my mind that this kid will walk and he'll do it sooner rather than later.   
From Our Home (Unit 2) To Yours...

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