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Luckily our area has great Early Intervention services. We are committed to the unknowns. Before having bkids we decided we were happy/able to commit to issues involving Downs Syndrome, Autism, needing to live with us forever, or anything else that can happen in utero or otherwise. So I know whatever comes up with her will be handled the best we can do.
Like you said it's just a lot of unknowns and I can't find a book with a lot of information because the effects range so greatly. I just want to know as much as I can.