Charlie's Blog

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

Monday, October 24, 2011

Survivor

I'm feeling much better, after a few days of being as sad as I've been about Charlie's DCM. It's really difficult not to become completely nihllistic (sp?) and completely give up. But then, how can you give up in the face of such beauty? This child is amazing.

So, a new day, a new page. We were trying to swtich Charlie from 5 feeds a day to 4, which completely did not work. He stopped eating - our NP's think that he can only handle 150mls at a time because of the blood flow needed to digest. I have to say, I have learned more in the past 2 months about human biology then I did throughout high school. So, back to 5 bottles a day we will go. Oh, and he's handling a little more cereal now (1 tsp at a time!) pre-bottle, and is enjoying eating, seemingly. Sometimes I have to dance and sing to get him to open his mouth, but once it's in there he laps it up. Good for now, I suppose. He's back to eating a third- to a half- of each bottle, and I'm not forcing him to eat anymore. I think it's important that each eating experience is a good one, so if he puts the bottle back in hs mouth to chew the nipple, I'm cool with it, but as soon as he gives me the 'I'm done' face, he's done. It's going pretty well these days.

If you want, a YouTube video of Charlie eating. It's pretty ridiculous - and so is my reaction. Click here.

The other exciting news around here is that Charlie's first tooth has broken through! He had been tonguing this certain spot on his lip for a few days and I pulled down the lip to see what was going on - and there was a white, glistening tooth! He keeps playing with it and doesn't like anyone to touch it - but if you put your finger nears his face, he'll grab it and pull it in, and then you can have a real good feel. It's SO sharp! He's going to look so different in a week or so when it grows in and he no longer has an exclusively gummy smile.

Well, it's bottle time around here, like it always is. Enjoy today's song: Survivor, by Beyonce and crew. Because that's what Charlie, and is going to be. I'm aware that the lyrics don't match our situation at all (I am so not breaking up with Charlie, ever) but the overall tone is certainly applicable. Perhaps we can think of it in relation to when DCM in no longer in the forefront of our minds?

Survivor - Destiny's Child

Now that you're out of my life
I'm so much better
You thought that I'd be weak without you
But I'm stronger
You thought that I'd be broke without you
But I'm richer
You thought that I'd be sad without you
I laugh harder
You thought I wouldn't grow without you
Now I'm wiser
Though that I'd be helpless without you
But I'm smarter
You thought that I'd be stressed without you
But I'm chillin'
You thought I wouldn't sell without you
Sold 9 million

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

Thought I couldn't breathe without
I'm inhaling
You thought I couldn't see without you
Perfect vision
You thought I couldn't last without you
But I'm lastin'
You thought that I would die without you
But I'm livin'
Thought that I would fail without you
But I'm on top
Thought it would be over by now
But it won't stop
Thought that I would self destruct
But I'm still here
Even in my years to come
I'm still gon be here

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

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