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I want to thank everyone for the warm welcome I received after I

posted for the first time yesterday. It means a lot. I may not be

posting as much because I have been reading a lot of older posts

trying to figure out what kinds of meds and treatments we may be

missing out on. For the most part I think Lexie is doing very well,

but as I've learned over the years it is up to the parents to be very

well educated and tell the doctors what they want for their

children. I have had to ask for liver function panels, glucose

tests, etc., and her doctor has always found this reasonable (which

makes me wonder why they weren't done in the first place). It's

frustrating. Anyway, I am so glad I have somewhere to go and fit in

with other parents like myself.

Love,

-- Mommy of Lexie, 9 years old on July 4th!

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