We were sent to see Dr. Lawrence Lenke at St. Louis Children's Hospital. They immediately put Brian in a back brace.
Brian's first backbrace he started wearing when he was just 14 months old. He had to wear it anytime he was upright. As he grew they made a bigger one. You can see they had to cut a hole in the brace for his feeding tube as it made feeding much easier and more comfortable for him.
As Brian got older his curve got worse. We tried going to Shriner's Hospital for the surgery, but they did not have an ICU and were afraid to have Brian there for any surgeries. So we stayed at SLCH.
This photo was taken while at Shriner's. By the time they decided to some some surgery, his spine was at 67 degrees. No wonder he had a hard time walking...besides the muscle tone.
They chose to put a growing rod in Brian's spine. This allowed them to get as much growth out of his back before doing a spinal fusion. In May 1996 he had his first growing rod put in. As he grew he had more surgeries where they would stretch his back along this rod and hook him back up to it, decreasing the curve for a while. I can't remember how many times he went through this, but finally in 1997, when he was 5 years old and in Kindergarten, he had his spinal fusion done. He was flat on his back for 3 months (he also had a wheelchair that reclined). He missed three months of school. After three months he remained in a back brace while in the upright position for another year. After that, he was brace free. He had a special brace he even had to wear in the bathtub. (I still have this back brace in his closet.)
Here he is about 4 years old playing with his cousins. The brace really did not stop Brian at all. (side note: He didn't walk until he was 2 years old and had tubes put in ears.) He wore the backbrace all the time. We had to buy bigger clothes for him to fit over the brace.
At this time he was still misdiagnosed and using a walker and still having the feeding tube. One day Brian had a huge welt forming on his back. We immediately called the doctor as puss was coming out of it. They took us in immediately and squeezed out about 50 ml of puss. It was so gross. They told us to go home, pack a bag, and get back for surgery that night. He had a staff infection and they had to stop it before it got to his bones. Surgery went fine and he went home on IV antibiotics. This happened several times over the next two years. They felt his body was rejecting the rod that was placed for the fusion. They were debating on whether they should take the rod out since the spine was fused. (Luckily during his most critical hospital stay he was correctly diagnosed and started on his mestinon. He has not had a staff infection ever again!!!)
UPDATE: He continues to this day to have the rod in his back. He still complains about back problems and pain. Once every 2 years he sees the surgeon for xrays. He will eventually need more surgery on his back as the lower part of his back that was not fused is now curving and his hips are out of line. The dr. feels he should wait a few more years for this surgery.