Friday, March 27, 2009

A small update and a couple of pics....




Charlie's seizures are back. The ones they insisted for 9 months weren't seizures at all, but they cause her to regress, need more oxygen, slow down her motility, mess with her autonomic functions and so on. At least now they admit they are seizures and we can treat them. I'm still bitter though. She had more potential than this, developmentally and health-wise. I sometimes wonder how far she could have come if her seizures didn't rage out for control for 9 months. *cry*

This time they've hit her autonomic system, which, if I'm understanding correctly, is a deeper part of her brain or her brain stem? Anyway, she's not holding her body temp steady all that well, which means she bounces between 95 and 103 for no reason that we can explain. Her motility slowed and she started leaking meds out her G port. We actually took her in because we thought her J tube slipped but nope, it was intact and in the right place. But she got a new tube out of the ordeal. The doctor said they like to wait 6 months if they can...I pushed him to do it though because her's was nasty and moldy inside. She's definitely having more apnea and longer spells. Not enough to make her sats drop considerably, but enough for me to jiggle her and remind her to breathe. Her heartrate has gone a bit wacky and for the first time, we've seen it go too low. Usually it's too high, up to 220 or above. She went down to 60 the other night. :-o Her nurse thought maybe the baclofen did it, but I'm not so sure, she hasn't done it with any of the other doses...

Which reminds me....we put her on baclofen, along with the ativan, around the clock. The sleep clinic doctor thinks her airway is spastic, not floppy, which I think is more common. Once again, Charlie just has to be different. LOL His opinion made more sense than anything I've ever heard about her airway issues. I just can't believe I never put it together myself! I always thought she had more trouble when she went into spastic mode, but I never considered her airway could be too. But apparently, there's something like 23 muscles in our airway, so duh, of course it could go either way. So the baclofen and ativan together should help control the spasticity and we have a script for oxycodone in case her pain gets unmanageable. We tried morphine and she screamed bloody murder so we won't try that again!

Onto the good stuff! She laughed 3 times yesterday! Well it was more like a high-pitched squeal, but definitely appropriate to the occasion (we were shaking vitamin bottles, one of her most favorite things in the world). She's started waving hi and bye. Not a typical wave, but she's lifting her arm when someone comes in or leaves. Her little way of greeting them. We know she's doing it on purpose because we'll say "wave bye-bye Charlie" and she'll lift her arm up. She's getting very consistant with it too. She only doesn't do it when she's irritable or very, very tired. She's still asking for food. She loves to taste stuff and I'm giving in more and more. Thus far, none of her pneumonias have been related to aspirating food, so I'm confident it's not hurting her. I give her a few tastes and then just suction it all back out. Unless it's something like fruit juice (we're talking a fraction of an ml) I don't let her attempt to swallow it. She's getting better at carrying on "conversations". She used to grunt at us quite randomly, but now she "responds" in between each thing we say very consistently.

She's so smart and I know most people think I'm just biased. I think it's commonly believed that people as physically affected as her simply can't have normal intelligence and I just don't believe it. She figured out SO early how to effectively answer yes and no and she answers age appropriate questions all the time. She can't say what she wants to say, but she still lets us know what she wants. So I'm going ahead with her "education" as normal. I refuse to not teach her stuff because I can't always tell if she's learning or not. I talk to her like a typical kid and I will teach her things like I would a typical kid. We're working on colors now. She has favorites and I know she differentiates. It may be a long time before she can let me know she soaked it all in, but I want her to have the words in her head, at least, even if she will never speak them. So that's it in a nutshell. There's more I'm sure, but I think I've rattled on long enough. LOL

4 comments:

Beautiful Mess said...

Sorry to hear about her seizures. Hope everything gets worked out for her and for you. Adorable pictures!

Happy Frog said...

she is too cute!! and oh so wonderful to hear she's making laughing sounds!! get that on tape! :) can't wait to see Princess C soon. . .

Anonymous said...

You're such an amazing mom to Charlie. Thank god she has you! Best of luck treating her seizures.

Kat_momof3 said...

you are not biased... you are the warrior... fighting for her like you have been since birth... and you are a proud brave mama... working with her all you can and trying to give her what parts of independence you can (deciding what to taste/not taste is part of that, I believe) within her abilities.

And if she never tastes anything to be exposed to flavors and textures, who knows... one day she could end up able to orally feed some or all of her meals... and then where would she be... she'd be older and less receptive to new flavors and textures.

I vote for some warm cider in the fall (same tiny dose, of course... portion of a ml), hot cocoa in the winter, and hot teas, too.

I agree... need to get her laughing on tape/camera.