What is Spina Bifida
Spina bifida is a Latin term which means "split spine" and describes birth defects caused by an incomplete closure of one or more vertebral arches of the spine, resulting in malfor...
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I want to be an encouraging to other parents with children with spina bifida but dont know how to get the word out there.
I have started a blog, but don't know how to let people know about it. It is www.raisingtoby.blogspot.com If you know of anyone please let them know. my son is three and i know we have a long journey ahead of us but id love to share it with other parents who would like to know they arent in the same boat. Also, i want to start sewing hospital gowns for spina bifida kids and babies who are having multiple hospital stays. I recently made some for a friends daughter who has cancer. I dont want to charge, but would need a donation to help with shipping. Again i dont know how to get the word out there, but I know i would have loved a cute hospital gown for my son during all of his first surgeries. if any of you want one and would be willing to cover shipping costs please let me know. I just want to brighten the days of parents who deal with stuffy hospital rooms and ugly hospital gowns. thanks kari Posted on 09/29/09, 03:09 pm |
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Hey Kari,
I just found out my baby girl has SB. Her defect is lumbar-sacrum and she has moderate hydrocephaly. This is all just so overwhelming at times. I've decided to keep her and I'm trying to get into that MOMS study for surgery, but I'd like to hear your story. Just what life is like with your son... I don't even know if Ill be able to work. I'm a single mom, but her father is supportive and I have tons of family. I'm a nurse, but that doesn't mean I know what life day in and day out is going to be like. She's not due until February, but if you get the chance I'd like to hear from you. Thanks, Kristen 
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