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is 21yrs old, 5' 2" tall and weights 203

My Ash is 16, 5'2" and 97# on a good day. Over the years I've debated the G-tube. Sometimes I wish I'd chosen differently, in terms of quality of life, less arguments, etc. I know it's hard for her to eat when she's not hungry, it's just that it's so necessary. So far we only use BiPap at night. She too has very shallow respirations and loses lung volume without this technology. Did your mainstream in school? Mine is in private school the past 4 years (5th and 6th grade public school was a nightmare) but I am considering public high school for her last 2 years of HS as she is so much stronger now than she was. It may only be transient good health but I'd like her to enjoy what she can. She wants to take drivers ed and home ec, neither of which the private school have. Sports would never be an option for her with little/no head control (walking is a new thing, she has never and will never "run"). Music and art she likes, though and she also has an interest in photography: all things she can do even if she ends up back in the wheelchair. Still, she says kids are often cruel to her especially in the public school. Heck I was "normal" as far as anyone knew and they were cruel to me. I understand, I just don't know how to help the hurt.

kj

mom to De-Arbra age 16

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