Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 every minute of the day, im reminded of how ill chrystine is... someone i dont even know who asks me how old she is and then remarks on how small she is or why is she wearing patches on her eyes or whatever or a friend or family member asking me how her kidney function is or when she is going back in the hospital or why she needs this or what is that? i think somedays are harder than others. i feel vulnerable today. she had 2 appointments yesterday with an occupational and physical therapist who says she needs intensive therapy now and her pediatrician. i thought she was making progress and i guess its because im her biggest cheerleader. these therapists know nothing about charge. i spend the first 20 minutes trying to explain it. but, i cant ever answer the question about what it means for her future. she is severely hypotonic, and we've been told if something doesnt change she might not walk. she started showing symptoms of a cold last tuesday nite. chrystine never gets a cold,she gets something much worse. we got her to the doctor wednesday and they used that machine to suction her nose out but still heard rattling in her chest so i needed to take her for a chest xray and bloodwork, she gets bloodwork once or twice a week to check her kidney function and glucose, because she is also pre-diabetic and chrystine has about 16% of her right kidney and none of the other working. her doc says she has pulmonary edema, this is the 2nd time. my question is, are any of your children experiencing these things? Quote Link to comment Share on other sites More sharing options...
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