I'm so sorry that you are going through this with your son. Unfortunately, I am not able to give you any advice but you have certainly come to the right place. There are many wonderful people on this forum who will hopefully give you some guidance. The fact that your orthopaedic surgeon is giving you little or no guidance is disturbing. Are you taking him to a pediatric orthopaedic surgeon? If not, that's the first place to start. You need to have a surgeon who specializes in pediatrics. It makes a big difference. You deserve to have a surgeon who has more compassion and will give you the guidance and support that you so desperately need. There are too many surgeons out there to settle for one who is treating you like that. Good luck and keep us posted.
Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
Dr. Flynn is an AMAZING surgeon!