Charlie's Blog

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

Monday, July 9, 2012

I feel better. (maybe not Matt, though)

 
In the interest of multitasking, I decided to write a blog entry while on the elliptical today. I am using Dragon dictation which is my new favorite app. Or so please forgive any minor grammar or spelling issues it may make.

Charlie has been doing well as of late. Matt and I had a rough day last weekend when we ended up taking Charlie to the emergency ward because he his right side looked slightly distended. He wasn't eating any solid, and he wasn't his normal cheerful self. We call the cardiologist on call, and she thought it was a good idea to bring him in. Long story short after some blood work, his white cellcount was slightly high, leaving them to believe he did indeed have an ear infection. Afters some anti biotics, we are basically back to normal.

So now, Charlie is eating pretty well and getting into everything. He is walking everywhere, and is very busy boy. He is eating almost 1000 cal per day which, from my calculations is about 150 more than what he was eating prior to the G-tube.

We went to the splash pad yesterday with our friend Grayson. Both boys had a great time. Charlie didn't know what to do with himself going through a tube with water spraying in all directions. There are some very cute pictures of yesterday.

The other big news in our lives is that Matt broke his arm last week playing baseball. Honestly I don't know what else could go wrong this summer but I don't want to ask that question,lest it get answered. He may have to go to surgery today, and definitely will this week. He broke his elbow so badly that they have to put in a metal plate to help with the healing. Matt is being pretty pouty about the whole thing, mostly I think, because he can't hold Charlie.

Now, our planned vacation later in the summer is in jeopardy. Honestly, though, I am just glad Matt is okay, and Charlie is doing well. Really at this point, it's all we can ask for.

I feel better - Gotye

There was a time I was down, down

I didn't know what to do

I was just stumbling around, around

Thinking things could not improve

I couldn't look on the bright side

Of anything at all

That's when you gave me a call

Now I feel better, better, better than before

I feel better, better, better, now I'm not down any more

And there were times I was sure, so sure

I couldn't turn it around

I couldn't care any more

About the good things I found

That's when you gave me a reason

To make me smile again

I only have to see you and then

I feel better, better, better than before

I feel better, better, better, now I'm not down any more

I feel better, better, better than before

I feel better, better, better, now I'm not down any more

Life sometimes seems to get the best of you

Like everything just brings you down

Just when you think there's nothing you can do

A friendly face will bring you around

And you'll feel better

You'll feel better, you'll feel better,

Better than before

You'll feel better, much better

 

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