aiesha
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CT. The fusions are pamidronate given via IV over about 4 hours. I will tell you that it was amazing. My baby literally came alive after having the fusion. He was already an alert baby but he just seemed so much happier and more active after the fusion. I am guessing he wasn't experiencing so much bone pain so he was moving more. He is doing so well. Yes, that is a great hospital from what I've heard. Good luck. I will try to get the name of some docs in your area and the contact at KKI. Birth to # is an intervention program that children with OI automatically qualify for. You can refer him yourself and it may be free based on your income. He should be able to get PT OT and other specialist services. |
"I am so happy to be a part of the MDJunction family! Where I used to be alone, I now have friends whom inspire me, comfort me, support me, and do not judge me. My new life began October 17, 2008. I weighed in with severe depression, social anxiety disorder and avoidant personality disorder. I was born with complications but I am fighting for my life and I will survive!!" (apieceofwork)