Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Tuesday, June 26, 2012

I need some sleep.

I know it's been a while since I posted. It's just that I've been so busy doing FUN things with Charlie (and some fun things for myself, too!). Life has improved dramatically of late.

So, the meat-and-potatoes first: the g-tube is working out well. I say 'well' and not 'beautifully' because it has yet to heal and that's frustrating, and there are always some growing pains with these kinds of things. It is much, much easier then the NG tube, though, and while we felt duped about the actual procedure itself (there were a lot of things no one told us), the real-life applications are incredible.

No longer do Charlie and I spend 4+ hours each and every day feeding through his tube. He now eats his formula overnight, and then just focuses on solids during the day. He is eating 1000+ calories on an average day, and 1100+ on a great one. We are calorie boosting everything with butter, but he is eating a good amount and our dietician is pleased with his progress so far. Once he was home, he really started to take off, eating and healing-wise. We've backtracked a little on the healing - the site has looked a bit gooey for the past few days - but it's looking better as of tonight and I'm hopeful for tomorrow.

Charlie started walking, and now is getting into everything. It is so. Much. Fun. And exhausting.

In other news: Charlie, my mum and I had a HUGE day today, and I am exhausted. Charlie is switching from one blood thinner (Enoxaparin) to another (Coumadin) so we had to go for a training/buying supplies/ informal nursing visit today. The only bad news is that the new drug makes his hurl if he takes it by mouth (it's super chalky). All of the good news: no more injections, one blood test every two weeks by the time we're level, it looks like our insurance company may cover the super expensive testing strips, and Charlie weighed in at 10kg.

Wait. What?

Do you like how I slipped that in there? Yes, after many months in the 9kg zone, Charlie is a porker at 22lbs or 10kg. Right on the button, too - 10.000. I was so pleased.

There's more but I'm too tired to write it. It boils down to I am enjoying Charlie's toddler phase and his new little personality, even if it is trying at times (my day: "Charlie, no. No. No. No. Mummy said no. No. No. NO! No. * sigh* No."). He is growing and changing and kissing everyone and enjoying life. It's wonderful. Goodnight.

I need some sleep - The Eels

I need some sleep
It can't go on like this
I tried counting sheep
But there's one I always miss
Everyone says I'm getting down too low
Everyone says you just gotta let it go
You just gotta let it go
You just gotta let it go
I need some sleep
Time to put the old horse down
I'm in too deep
And the wheels keep spinning 'round
Everyone says I'm getting' down too low
Everyone says you just gotta let it go
You just gotta let it go
You just gotta let it go
You just gotta let it go


No comments:

Post a Comment