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Monday, September 6, 2010

Motor delays? What motor delays? (Tues 6-8-10)

I'm pretty sure that's what the PT from the early intervention program is going to say when she comes to work with Raya next week. :)

As you can see, the physical therapy we've been doing every week for the last 3 months has been very effective & beneficial. :) Her neck still has room for improvement but is getting better, and she's age appropriate in almost everything else. Her one big delay now is that she is completely and utterly unable to roll to the right. Not from tummy to back or from back to tummy. She's totally proficient at both when she rolls to the left but just can't figure out how to roll to the right. The little stinker is going to be crawling any day now though, which we were not anticipating at this age. Even her current level of mobility has made things interesting since she's tethered to her feeding pump for 16 hours a day. :)
She started feeding therapy last week with early intervention and I have high hopes for that. Tube feeding has been a blessing and a curse for her, as it apparently is for a lot of kids who are tube fed. She's growing & her health overall is great compared to how she was 5 months ago but the trade-off is that she has very little interest in putting anything but toys in her mouth. When we try to feed her, she doesn't really try to spit food out but she doesn't try to swallow it either. She is probably lacking some of the normal oral sensation and I can imagine that vomiting 2-3 times per day has probably dulled her sense of taste and may make it unpleasant to swallow anything anyway. You can tell in the picture that her tongue is kind of sticking out of her mouth too. It does that a lot these days. The tube feeds are a necessary trade-off and definitely worth it, but the feeding therapist warned me that we still have a long road ahead before she'll be eating enough orally that she won't need the tube anymore. I must be pretty naive because even after 5 months of being told that we'd be doing this for "a while", I still didn't comprehend that when they say "a while" they're talking in terms of possibly years and I'm thinking weeks or months. We're still kind of in the discovery phase but I feel like we're getting close to more of a maintenance phase.

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