A brief history of my medical issues and what is going on now
Tetralogy of Fallot - a combination of 4 heart defects requiring surgery when I was a baby. I now have a really cool scar that I call my race car scar. My special heart doctor says I will have heart surgery again soon so they can replace my valves and help my heart work even better.
Kyphosis - congenital scoliosis - spina bifida
I have a new back doctor who is doing test to learn how to fix my back and to reduce the pressure on my heart and lungs. He says I will have surgery on my back also.
Bernard-Soulier Syndrome - I have problems with my blood. I have a low level of platelets and they are very large. It makes it hard for my blood to clot and causes me to have really bad nose bleeds. The doctors have special blood that they can give me if I get hurt and I need more blood. So far, I have had 5 blood transfusions, but that was when I had surgery for my heart. Please donate blood and platelets, when you can, to help people like me.
Hearing and vision problems - my school is working on getting a amiplification field to help me in class and I am very good about keeping up with my glasses. I have an IEP at school to help me "catch up" due to developmental delays and I love all of my special teachers. I miss recess right now but I have very good friends who volunteer to stay inside and have quiet play with me. I only get to go to school a couple of days a week right now - and that makes my sisters very jealous.
Failure to Thrive - I have a low level of growth hormones and so I am still very small compared to my friends. I am going to a new doctor to help me to grow bigger and get really strong so I can play more and jump even higher.
Artierial Venous Malformations and abnormal brain waves - This causes me to have seizures sometimes. I am having more test soon to find out how they can fix it. They give me medicine to make me sleep and take pictures of my brain. Sometimes the doctors let me look at the pictures of the inside of my body.