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Neurology update

Raya had her annual visit with the neurologist today. I have to say that it feels REALLY good to say "annual" since we've seen all her other doctors MUCH more frequently than that. :) Overall, things went really well and it was a good visit.
For starters, Raya's hyperreflexivity has decreased significantly since her last visit, meaning that when the doctor taps her knees with the little hammer, the reflex response is not as overly reactive as it was a year ago. She also evaluated Raya's gait while walking and "running," i.e. walking fast, she's impressed with how well Raya walks. She said that her stance is still wider than it should be and she still has her arms in high guard position (raised to shoulder level with her hands up)
but that she is SO much improved since our last visit. She does still show increased tone in her legs but that has improved since the last visit as well. (THANK YOU, THERAPISTS! :)
We talked about the labs that had been done before and had come back with abnormal results. Raya's lactic acid has been abnormal every time they've checked it. Her pyruvates were abnormal a couple of times and the urine organic acids have always been abnormal too, but they thought that one or both of those might have been as a result of the MCT oil in the Neocate formula that she was on so they didn't think too much of it. The lactic acid has always made everybody scratch their heads though. It's always been on the high side but she's never showed any signs of lactic acidosis or any other conditions that would be indicated by those lab results. Since it's been almost a year since any of that was checked last, we're going to do some blood work and send out for the urine organic acids again. That means collecting a urine sample from an almost 2 year old, which should be really fun, and then freezing it. Yep, more frozen pee. :) I was really REALLY disappointed to find out that our favorite lab tech is gone now too. She is the ONLY person other than one nurse at the hospital who has ever gotten blood out of Raya's arm in the first stick. Raya's veins are not very cooperative so I'm crossing my fingers that the new tech will be successful.
Overall, the neurologist is happy with Raya's progress. She is very optimistic about Raya's future and her potential to overcome the symptoms that she currently experiences. She wants Raya to continue receiving therapy services until at least kindergarten or 1st grade but she thinks that by the time she's 6 or 7 years old, we may not be able to see any traces of CP at all. I think she's probably right. We've seen so much improvement in the past year, and especially since we started PT in December and OT in February. We'll get the labs done and should have the results back in 2-3 weeks since some of them have to get sent out to a lab in another state. If there's anything to be concerned about, we'll see her when the results come back but otherwise, we don't have to go back for a year.
On a GI note, I got a phone call from one of the nurses yesterday because the doctor finally got my note from last Tuesday about Raya's increased reflux and only gaining 2 oz in a month. (The communication isn't what it used to be. The new nurse is still learning the ropes, I guess. :) She said to increase the Prilosec and come see her in the next couple of weeks. We have an appointment scheduled in 3 weeks anyway and the nurse never called back to say that we needed to come sooner so I guess we have 3 weeks to get back on the right track. :)


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