Hello,
My 13 yr old daughter with Quad. Cerebral Palsy will be having spinal fusion surgery this August. I am looking for parents who have a child like mine who can help me and my daughter prepare and get through this surgery.
Amanda's scolicois is due to her CP. Her spine curves slightly all the way down until you get to her hips then it is severly curved. When I saw the X-ray I cried and cried and asked the doctor if she was in pain. He said no, but I can't but think at least the muscles hurt. Amanda was seen by Dr. Leake from Children's Hospital in St. Louis. He said soon she will not be able to sit in her wheelchair or use her stander and would be bedridden. Her father and I do not want that for her and we said we want her to have the spinal fusion surgery they recommend. I asked if he could just fix the spine that was severly deformed and he said no, if he did that she would flop over. He said he has to do the whold spine. Amanda's father and I as very concerned about right after surgery. 2 years ago Amanda had her colon removed due to Ulcerative Colitis. The surgery was 7 1/2 hours long. She was in ICU for 1 week. She lungs collapsed and she had pnemonia. Could any parent of a child like mine respond with your story and any help you can give to help Amanda and her family get though this time.
Thank you,
Sue
My 13 yr old daughter with Quad. Cerebral Palsy will be having spinal fusion surgery this August. I am looking for parents who have a child like mine who can help me and my daughter prepare and get through this surgery.
Amanda's scolicois is due to her CP. Her spine curves slightly all the way down until you get to her hips then it is severly curved. When I saw the X-ray I cried and cried and asked the doctor if she was in pain. He said no, but I can't but think at least the muscles hurt. Amanda was seen by Dr. Leake from Children's Hospital in St. Louis. He said soon she will not be able to sit in her wheelchair or use her stander and would be bedridden. Her father and I do not want that for her and we said we want her to have the spinal fusion surgery they recommend. I asked if he could just fix the spine that was severly deformed and he said no, if he did that she would flop over. He said he has to do the whold spine. Amanda's father and I as very concerned about right after surgery. 2 years ago Amanda had her colon removed due to Ulcerative Colitis. The surgery was 7 1/2 hours long. She was in ICU for 1 week. She lungs collapsed and she had pnemonia. Could any parent of a child like mine respond with your story and any help you can give to help Amanda and her family get though this time.
Thank you,
Sue
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