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Answers, good news, and more question marks (Mon 4-9-10)

Raya had her follow-up appointment with the neurologist today and we got a few more "it's not x or y but it could still be z" answers. :) There was good news too though:
All of the genetic/chromosomal labs came back normal (whew). That means she doesn't have any deletions in her chromosomes, fragile x syndrome (mental retardation) or early indications of autism. Some of her amino acids were a little off but not enough for concern. She is anemic though. (go figure, she's related to me and she's a redhead :)
The EEG came back normal. They did see some spells where she tensed her body but they don't think it was seizure activity. It's something we'll just keep an eye out for but not something to worry about right now. Another relief.
The MRI was mostly normal as well. Her brain tissue looks good and her spinal cord looks healthy too. The only abnormality they could see was that she has mild scoliosis that is in conjunction with her torticollis. There is "increased signal" which is most likely additional fluid in the C1-C2 joint.
There are still some areas that we're not sure about yet in addition to all of the GI issues. Physical therapy is helping her neck but it's still a ways off from being normal so the neurologist ordered an ultrasound of the muscles in her neck. That way we can make sure that her torticollis is being caused by tight muscles on one side and weak muscles on the other and not something structural.
Just to make sure we have all our bases covered, they're going to do another more in-depth hearing test next week. They were supposed to have done it when she got the MRI done & was already sedated but they messed up so hopefully she'll cooperate and sleep through it like she's supposed to.
She is still showing some delays in motor skills and just some odd things. For example, now that she giggles, I was tickling her and making her giggle and her left hand stayed open & relatively relaxed but her right side tensed up. She also makes fists a lot and makes fists with her thumbs inside of them which is a newborn-y thing that she should have outgrown by now. A lot of it could be tied to her torticollis but the neurologist said that if that were the case, she would have expected her symptoms to be on the opposite side than what they are. Anyway, some of the things that she does still make the neurologist think that we may see something a little ways down the road that we can't really diagnose yet just because she's still young. She has a follow-up in 6 months so we'll see what the next 6 months bring, I guess. :) For now, we'll keep going with PT and now that we've done all these tests, she can be evaluated for the early intervention program & see what else we can do for her.

On a more positive note, since we started the 20 hour continuous drip feed last Monday, she has all of a sudden porked up. She has gained 1 lb, 3 oz in the past 2 weeks and I think a lot of it was in the past 5 days. She's officially doubled her birth weight too, which took Kaida almost 9 months to do. This picture makes her head tilt look REALLY bad but you can also see how much she's filled out this week. I'm really not used to changing diapers on a chubby bum! :) Speaking of diapers, unlike Kaida, Raya will be outgrowing size 1 diapers before her first birthday. :)


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