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Tuesday, October 5, 2010

A diagnosis...

Today was Raya's 6 month follow-up with her neurologist. I should just quit forming expectations about doctor visits because I'm usually wrong. :) I was expecting her to say that Raya looks great & we don't need to see her again, and half of that happened.
To start, Raya now weighs 9.3kg (20 lbs 8.2 oz) which is HUGE compared to our other kids. Developmentally she's doing great as well. She's alert and very interactive. She crawls faster than I can keep up with her at times and is standing independently for a few seconds at a time. She will be walking any day now, which will make her our first kid to walk before a year. Dr. A was thrilled with the progress she's made since April. BUT, there's a "but".

She still has increased muscle tone in her upper and lower extremities, she's hyper-reflexive (meaning her reflexes are very sensitive) and she has sensory processing issues such as wanting to be held but not held close, fear of and sensitivity to food in her mouth, etc. Even though her MRI was clear, those issues combined fit the clinical description of cerebral palsy, which is something we had discussed at her last neuro appointment in April. Based on today's evaluation, Dr. A has decided to give her the clinical diagnosis of cerebral palsy.
I suppose I shouldn't be happy about that, should I. I am though. This diagnosis doesn't really apply to or help with the GI problems, but it will allow her to qualify for more therapies and will give us something to show to our insurance company if/when issues arise over her therapy. More therapies will help her continue to make progress with her coordination & fine motor skills and that's a very good thing. Obviously I'm not happy that her symptoms are to a degree that she can be given the CP diagnosis, but since the symptoms are there whether they have a label or not, I'm grateful to have a label. Maybe happy isn't the right word, but grateful to finally have someone say, "We acknowledge that your child does have a problem and this is the name of that problem." Now if we can just figure out the vomiting thing...

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