Sunday, June 21, 2009

Pics and thinking out loud...

Mushroom chairs are cool!


So Charlie has been jerking and shaking more and more again. I don't know how much more we can increase her meds. The other day I was holding her while she was sleeping and she was just so perfect and peaceful. No jerking, no retching, no desatting (as far as I can tell because she's off the monitor, but she wasn't pale or blue at least) and for a brief moment I actually *forgot* all the things that have been wrong lately. And then for a split second I thought, "Maybe it's my imagination, maybe nothing is wrong with her at all!" Of course, I'm not talking about the CP and other stuff, just the really bad stuff lately. The feeling only lasted a few seconds total and then I was brought back to reality. Her eyebrows started twitching in her sleep. That's a sign she's going to start jerking.

In between the meds, she can have a little fun time, if she doesn't start jerking. I'm capturing as many smiles as I can. This is her enjoying a toy Grandma gave her. It lights up and she's even trying to lift her arms to touch the hanging butterfly that makes it light up and play music.


Less than 24 hours later (I had taken the night off and her favorite nurse stayed with her overnight), I came home to her like this:

Apparently she jerked a lot and desatted and was awake most of the night. She was pretty heavily drugged when I got home...yet still jerking. And all day it's just been a cycle...jerking, meds, sleep, jerking, meds, sleep.

It's just so crazy how she can go from seemingly perfect to a drugged and shaking mess so quickly. Just when I think maybe I'm imagining it all, I'm brought back to reality by her pale face, sunken eyes, tiny pupils, and shaking body.

She's starting to look more like she did when we first admitted her for this whole ordeal. Like this:

It's scary to see a beautiful girl, full of life, look like this in the blink of an eye.

1 comment:

Bonnie said...

I'm so sorry she's not doing well.