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A: I actually learned that she has Cerebral Palsy when she was ten years old. We knew when she was a baby that she had a few problems with her feet. They would turn in at 90 degree angles. She had a mild case of Cerebral Palsy called congenital spastic quadraparesis. Q: What parts of the body are affected by it? A: In her case both feet and legs and both arms were affected. She walked on her toes and when she walked later she would flap her arms like she was going to take off and fly. The tendons in her legs did not grow that is why the children walk on their toes. It affects the heal cords, and hamstrings, as well as the muscles in the feet and hands. The muscles and tendons in her hands did not develop. This caused weakness in her hands and she will tend to drop things. A child with Cerebral Palsy does not have good balance. As a result she is not able to ride a bike like normal people. Q: What treatment did your child go through to help her? A: When she was between 11 and 13 months she was put in casts on both feet to try to straighten her feet but that failed to help very much. When she was two, she had a bone transfer surgery where the doctor took a bone from her leg and placed it in her foot. That seemed to work for a little bit but the foot rejected the bone and the bone evaporated. When she was three, we were sent to Guam and nothing was really done there. The doctor said he thought she had a disease where she would have to have some surgeries on her legs when she was older but he never expanded on it. In the mean time she walked on her toes and by the time she was ten we finally had a doctor at Travis Air Force Base that knew what she had and how to treat it. She had four surgeries and a lot of testing in the next six months of her life. They had to rule out other diseases so she was put through MRI where she was put in a machine and x rayed for two hours. They took pictures of her spine every minute. They had to rule out that she did not have a tethered spinal cord. She also had an EMR where they stick needles in your wrists to see if you have any nerve damage. She also had a lof of lab work. After all of the testing the doctors began the surgeries. The first one they cut her heal cords and extended her tendons. She was in a cast for four weeks. We had to return to the hospital a week after the surgery so they could extend her heal cords more because they were so tight that the doctor could not do it in one surgery. The third surgery the doctor stretched her hamstrings. That time she was in a cast from her toes to hip on both legs. She had to be home schooled for the six weeks because we could not get the wheel chair through the classroom door. At the end of her surgeries she could walk flat footed for the first time in about eight years. It was a very touching site and I owed it all to that doctor. (Dr Blazier (sp?) you were at Travis in 1988 thank you. I know the way I was going I would have been in a wheelchiar by now if it wasn't for you. If somebody is reading this that knows him make sure he sees this.) The doctor warned me that this was just a treatment and that she would probably go back to walking on her toes while she grew. The doctor said she would probably be in a wheelchair when she was in her late teens or early twenties. We retired from the Air Force and received very good treatment from the Shrine hospital in our community. She was given braces and physical therapy. Today she is doing fine. She has trouble with dropping things and does walk on her toes when she is tired. Q: What was your challenge you faced. A: One of the challenges we faced was trying to figure out what was wrong with her. Then as she grew older we had to deal with the laughs and mean attitudes of both children and adults toward her and me. I had a couple of people accuse me of child abuse and told me that I should be put in jail for breaking both my baby's legs. We also had the challenge of a few teachers not believing her disability until they got to know her. I had one teacher tell me that my child was showing off when she dropped things and that nothing was wrond with her. Q: What was the joy you had with your child? A: Some of the joys were knowing that my child had a brain and could go to a regular school and become a productive part of society. Probably the best joy was the first time I saw her walk on her flat feet. I was joyful for her tachers that had watched her through our hard times and through the surgeries. When she walked into the room the first time all her teachers were crying too. Another joy was when I saw her in marching band. She had a hard time marching but she was out there doing her best and Mr. Weathered did not care that she might not be able to roll her foot like the rest of them or that she might be a little off. Q: What stresses do you have? A: Some of the stresses were not knowing what was wrong with her and going through all the appointments and surgeries. Also there is the stress of being supportive of your child as she comes home from playing in the playground or at school with tears in her eyes because the kids are making fun of her and some of the teachers don't even seem to care. We were lucky that we did not have the expense because we were in the military and all the surgeries were done for free. The braces at Shriners were also at no cost to us. Q: Does it affect the marriage and family? A: Anytime a couple has a child with special needs it will affect the marriage and the family as a whole. I felt I was to blame for causing the problem and you feel very guilty. You wonder what you could have done differently so the child would not have the problem. My husband coped with the problem by choosing not to deal with it. I was the one going to the doctor and sitting in the waiting room during her surgeries. There were times when I just wanted him to hug me and hold me and tell me that things were going to get better. I was hurting and I needed him to make that hurt go away. Don't get me wrong he is a good husband and father but there were times when I felt he could have been there for me more. Also the other members of the family are hurt and the tend to lash out and blame me for the problem. People tell you that you shouldn't feel guilty but you always do and I suppose the guilt will not go away. Her little sister is affected too because she feels sorry when her sister is hurting and ther is nothing that can be done for her. It is hard for siblings to hear jokes and laughter and see her sister cry when she is sad. Q: How did your child get Cerebral Palsy? A: When she was born it was an emergency c section delivery. I had toxemia. My daughter had to be born or stand the chance of losing her and me as well. There was a 20 percent chance that she would not servive and a 10 percent chance that I would not survive. When the delivered her, she did not breathe for over a minute. When a baby does not breathe, the oxygen does not get to the brain and that causes Cerebral Palsy. |
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