I'm justing looking for other's experiences and support. Julia, my 13-year-old daughter, has surgery scheduled for Aug. 12th at Lucille-Packard Children's Hospital (Stanford) with Dr. Rinsky. She has cerebral palsy, seizure disorder, GJ tube fed, and is not able to communicate other than to express happiness, sadness and pain. Scoliosis was not an issue until about a year and a half ago. Since then it has progressed quite rapidly. Julia currently has a 41 degree mid-lumbar curve. We've consulted 3 surgeons and have learned that it will continue to progress due to the cerebral palsy and the fact that she has some growing left to do. We can wait on surgery but it isn't recommended due to the fact that as it worsens it will be harder to correct and by then she may develop some complications from the scoliosis (respiratory compromise, other organs being shifted and compacted due to her curvature, and hip dislocation). We agree with the surgeon that it's best not to risk the possibility of further complications but rather have
surgery now while she's healthy and still flexible.


It's been a tough decision to make for our little girl when she has so many other issues. I have a lot of sleepless nights and I'm trying hard to not be anxious. I know many of you have been through this. Anything you have to share would be appreciated!

Thank you,

Marti