Today is surgery #7 on my 13 year old's arm. He is really amazing about it. I think God sometimes knows exactly what kind of qualities people need to survive. God has blessed him with a wonderful attitude and confidence in his doctor.
We knew the day he was born that his right arm had a problem. It was swollen and unuseable. It had a large red band on it, which we found out later was an amniotic strand, something undetectable by any test, that can wrap itself around any body part and take off limbs. He also had a scar where the skin had grown together when they pulled his arm down. By 6 months old, it was looking fairly normal and he was using it. About age 4 we noticed his ulna was sticking out. It was a result of the radius not growing. Was it a result of the amniotic strand? Did it damage the growth in his radius? We'll never know. We just know that it wasn't quite normal. After some tests, surgery #1 was performed in kindergarten to place a marker on the bone and try to stimulate the radius' growth plate. We saw the doctor every 6 months-1 year to determine if it was growing. It was determined that we should wait and watch until puberty and consider bone lengthening. He had his first bone lengthening surgery in 5 th grade. Our doctor had never done an arm, but had done legs before. He had consulted the guru in Baltimore, who had learned the Ilizarov method of bone lengthening from Dr. Ilizarov in Russia. We decided to stay here in Oklahoma after getting feedback from several health professionals that Dr. Davey was indeed the best orthopedic doctor in Oklahoma for the job. Surgery #2 went like this: Go in, break the bone, insert two pins to an external stabilizer rod, and we turn the pins 1/4 turn several times a day , and as the bone heals, it is stretched and made longer. It worked for the most part. Surgery #3, same thing on the ulna. Surgery #4, Wrist is dislocating, place more pins in to keep it stabilized. Surgery #5, Take pins out of ulna and wrist, Surgery # 6, Finally get pins out of the radius! All of this took about 2 years. Today, surgery #7, is to take out the growth plate at the ulna so it doesn't grow on it's own and mess up everything we've accomplished. This will happen again around age 18, to get his right arm up to speed with the left. We feel blessed that he even has his arm, and it is useable. When you see the damage amniotic strands can do, we really feel blessed. I personally feel it happened late in my pregnancy, because his arm had mostly formed, and it (the strand) wasn't tight enough to totally cut it off. Supposedly these things have no genetic links, they just happen sometimes. But my sister-in-law lost a baby midway through her pregnancy due to an amniotic strand being wrapped around the umbilical cord and cutting off all nutrients to the baby. So you see why we are thankful.