Chapter 2 A. I. Deupont Children’s Hospital

When I was two months old I started seeing Dr. Miller and Dr. Backrach at A. I. Deupont Hospital in Wilmington, Delaware. They are Orthopedic Surgeons that specialize in children with disabilities. I saw them two to four times a year until I  was 18. On these appointments they monitored my leg muscles and my left arm because that is the parts of the body that my Cerebral Palsy effects. Dr. Miller would always begin my appointments by asking me how I felt my walking was going. He would stretch my legs, test their strength, and reflexes. Dr. Miller spent a lot of time monitoring my walking. He had me walk in the halls so he could see how my legs and feet were landing. He was concerned about how my knees were turning in towards each other and thought that eventually I would need surgery on my legs or I would be wheel chair bound the rest of my life. Dr. Miller was very determined to prevent me from me needing surgery, so he was able to set me up with a physical therapist back home to strengthen my legs. This worked because I was able to avoid needing surgery. I also had many Gate Lab Analysis at DuPont. This was my favorite part about going to DuPont. The Gate Lab was a very fun place for a kid. There were large stuffed animals around the room, and I would always run up to them and hug them. My favorite one was a giant stuffed monkey sitting on a swing and I would always want to push it. This just showed that despite the fact I was going through treatments for Cerebral Palsy I was the typical little girl. On these appointments the Gate Lab Specialist would video tape me walking and running. A couple weeks after these appointments I would see Dr. Miller to watch the tapes so he could analyze my walking. He was always pleased with my progress, and he said he never seen a patient with Cerebral Palsy improve the way I have. By high school he saw that there was no longer a need for surgery, and my condition improved enough that I was able to stop seeing specialist after I turned 18. This made me happy. I knew that my adulthood wouldn’t be ran by doctors appointments like my childhood was. As a teenager I would dread these appointments. I think the main reason was because my mom would try her best to schedule my appointments on her days off of school. Every time the receptionist would say I would need to come back in six months, my mom would pull out her calendar and say, “She has off school this day. Let’s schedule it for then.”. I just wanted to spend my days off of school like any other teenager, hanging out with friends. My mom tried her best to make these days as enjoyable as possible. After my appointments she would take me out to eat and shopping. That did give me something to look forward to. I always told myself at least I would have something fun to do on my days off.

I also had a seizure disorder as a child due to my Cerebral Palsy. A seizure is caused by a disturbance in the electrical activity in the brain. Seizures were the scariest medical problem I have ever faced. My seizures began to only occur once in a while, so the doctors told my parents to monitor what happens when I have a seizure. When I had a seizure my mouth felt numb, I drooled uncontrollably, my body would shake, and I couldn’t talk. Not being able to talk was the most frustrating part of having a seizure because I was able to understand what everyone was saying, but I wasn’t able to respond. I was completely aware of everything that was going on when I was having a seizure. In my mind this was scarier than it would have been if I blacked out, especially considering the fact the last seizure I ever had occurred when I was 9 years old. As a little girl I couldn’t understand why my body wouldn’t stop shaking and why I wasn’t able to talk. I remember thinking I just want this to be over and what if it doesn’t end every time I had a seizure. Most of my seizures lasted only three to four seconds, but they were the longest three to four seconds of my life. After I came out of a seizure it took me a couple of minutes to be able to talk than I was completely back to normal. My worst and scariest seizure occurred when I was 9 years old. My family and I were out to breakfast one morning, and I started to have a grandma seizure, which is the most severe seizure you can have. My mom immediately made an appointment with Dr. Miller and he put me on seizure medication to control my seizures. I felt like this ran my life for the three years I was on the medication. The doctors weren’t sure how effective the medication was going to be, so my parents had to monitor me. This was occurring during the beginning of middle school and I couldn’t understand why I wasn’t able to go to sleep overs that my friends were having. I always felt left out because I had to leave birthday parties when my friends got to stay overnight. My parents were afraid that I would have a seizure and my friend’s parents wouldn’t know how to handle it. At that time I saw it as my parents were being overprotective and not letting me grow up. Now that I am an adult I understand why they had to do things that way. My seizures stopped when I was in 6th grade and I was able to go off of my medication in 8th grade. This gave me much more freedom. I was finally able to spend the night at my friends’ house. I didn’t have to worry when it was time to take my medication. This also gave me freedom from fear. I didn’t have to worry about when my next seizure was going be or how serve it was going to be.

As much as I dreaded going to DuPont as I child, I am grateful for the experience now. I wouldn’t have the independence I have today if I didn’t go to DuPont. Dr. Miller did everything he could to make sure my Cerebral Palsy improved, so I can live independently. Now that I am an adult, I know that without DuPont I wouldn’t be a “career woman” with my own house. I would be living with my parents and caregivers the rest of my life. I learned from going to DuPont that with God and a positive attitude it doesn’t matter what a doctor predicts, you can overcome any prognosis. A doctor or a disability didn’t control my destiny, I did.

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