I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, December 16, 2009

Checking In!

Tis the season for being incredibly busy! Can't believe it's been 17 days since my last post!

Everyone is doing well...Alex is keeping very busy with therapy at Children's Hospital and at home. I have to say, having a child with numerous disabilities makes it really hard to prioritize what you can work on. As far as my wish list for her - walking - check, very important. Sitting independently - check, very important. Chewing - check, very important. Using switches to communicate - check, very important. Swallowing without having food in her mouth, meaning less drool - check, very important. So between 'normal life', school and all of the areas we need to work on, there just aren't enough hours in a day to do it all - and you have to be consistent and dedicate a lot of time to one area so she has time to actually 'get it'. Her physical therapist, Shannon, and I have had a few conversations about Alex the last few weeks and how she really feels like Alex should (and could!) be walking independently with a walker, but she just doesn't want to do it - she's being a bit defiant and a lot of the issues we're having are behavioral...ok A) I guess that's bittersweet - because that means cognitively she's aware of how to be defiant and B) how the heck do I get her to realize that's not ok?!? I will have to try and take a video of her - but when she's not wanting to walk, she will literally take two or three steps and then cross her right leg over her left leg and hold her foot up to her knee - earning her the name flamingo on several occasions. Does she have low tone making it very hard for her to have the strength to constantly stand up and apply all her weight in the appropriate places, ABSOLUTELY, can she do it though? We think she can. Try this experiment - stand up, cross your right leg over so that your right foot is leaning against your left knee....try balancing on just your left leg for a minute or two...that takes more work than actually taking steps. Sigh....this to shall pass and we'll get there. To think of her walking throughout the house in a walker just seems light years away, but then again, so did her eating by mouth and look where we are with that!

Speaking of eating...she had an appointment at the feeding clinic with Children's Hospital a few weeks ago and I was really quite disappointed. First of all, she only gained a half a kilo. Seriously? For as much as she's been eating a half a kilo in four months?!? Very frustrating. The only positive spin I can put on it is that hopefully it's because we've ramped up her physical therapy and she's burning more calories throughout the day. The nutritionist wants us to go back to giving her a tube feeding at night once she's gone to bed. Do you know what disappoints me most about that? The fact that she just got nightgowns for her birthday and I was SO excited that for the first time, ever, she could wear a nightgown to bed because we didn't have to worry about her extension tubing. Ahhh the simple things some people take for granted! My other frustration with the appointment is that I feel like the feeding clinic is constantly dropping the ball with us. For the last year we've gone in five times for one kind of evaluation or another, and they keep telling me she's a great candidate for the feeding program and that they will call us as soon as there is a slot open, only they've never called and I've spoken to other people who went in for appointments long after we did and they've gotten slots. We'll I've heard that story four different times now, and I feel like I'm literally wasting my time and energy going there. I have such a bad taste in my mouth for them that I'm trying to separate my feelings for what's best for Alex - but then I keep circling back to they had NOTHING to do with getting her to eat solids, that was all us, so why can't I just work with her speech therapist on chewing and sucking? I guess we'll just have to see!
There's more to write about, but that's all I have time for now!

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