Friday, February 6, 2009

Boogah!

We have had a big week in Abby's recovery. She is taking her feeds better and she is now at 200 ml's in a hour per feed. Pretty good for a kid that was gagging on 50 ml feeds less than 2 weeks ago. She seems to be filling out already. Her face doesn't look so drawn and her hair is growing like crazy.
With the better nutrition she is more vocal. Besides the normal incoherant babble I got a word out of her today. We were in the little girls section at Walmart and we walked by a display and she said, " Dora." It was awesome. If I could walk around and tape her whole life just to save those little moments I would.
She is also leaning forward in her seat and holding up her arms when I open the car door. Most Moms get this as an infant. I am loving it and so looking foward to what she will be able to show us now.
We had her IEP meeting this morning and her teachers and therapists were so happy to see her. We discussed the changes since she had been to school and what we will all need to do differently now. Since she was down for so long and not active we are concerned about her tone and strength. Especially with her core and balance. They are going to look into putting her into a gait trainer so she can go crazy during gym time and not just watch or walk around the room. There are so many things I'd like to have for her at home but I'll take school for now. We have heard so much about the Wave Vibration Board and I tried to hint about it hoping they could get it for her school but they didn't bite. It's probably a good thing we are broke cause if not your probably couldn't walk through my house for therapy stuff I want for her.
There is always discussion at the IEP's about switches and communication and what they accept for answers and false positives. I always get a little frustrated at this point. I understand their case that they need an answer they can record. I am hoping that they understand my point that they have to accept what she can give. That is the way we work at home. If she can point she points. If she can touch it with her foot that's what she said. Her eye gaze and motioning are her only ways to communicate and she has no control over what works when. I'd fix it if I would. Lord knows I would. But I can't. There are a lot of things I have had to learn to accept the last few weeks. What I can and can't do and the same for my Abby. It's just the rest of the world I have to work on!
Peace and love
Mommy and Abby

4 comments:

Caitlyn said...

I'm so glad to hear things are improving! I agree about the communication! Sometimes the teachers/therapists just don't get it! We had a teacher that told us he couldn't give Caitlyn credit for knowing something, because she couldn't show her knowledge in 4/5 trials...She wasn't consistant...A friend of mine said it best when she said "The only consistant thing about our girls is their inconsistancy!" And our IEP does say "will communicate through touch or eye gaze," for each goal...so they can do it, you just have to not give them another option!

Brooklyn and Kelly said...

YAY - I am so glad the feesings are going better and for you t ohear "Dora" oh my gosh - who knows what else you might hear. I pray she bounces right back with her strength too!!!

Avery said...

yay, abby! You are working so hard. I know you will be back to "normal" soon and this whole experience will be a mere memory!

hugs from sunny and warm Alabama! :P

Karlie Grace said...

Way to go Abby!!! I love that she said "Dora"! How exciting! Since she's getting better nutrition it's hard telling what she'll rattle off to ya! I'm soo thankful she's finally starting to feel better and her feeds are successful since switching formulas. Sending big hugs to ya both!