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Age 2 1/2 years
At four weeks I was released from the hospital with the diagnosis of Cystic Fibrosis and put on progestimil formula. Once I came home everything seemed to calm down, but Mommy wasn’t happy with my doctor so she decided to get a second opinion from another baby doctor and the diagnosis of Cystic Fibrosis was dropped. I was gaining and growing like a weed but I wasn’t in any hurry to hold up my head, roll over, or sit up. I loved to eat. Mommy just thought that I was a really laid back baby. I slept through the night at three months and slept most of the day until I was about six months old so no one really had a chance to see my beautiful brown eyes. That is when Mommy and Grandma noticed that I wasn’t following things and that my eyes were jumping and moving fast. So off we went to Morgantown University in West Virginia where a pediatric ophthalmologist noticed my abnormally small optic nerves and limited vision. We were then sent to Dr. Bodensteiner, a neurologist, who ordered a MRI, which showed that I was missing part of my brain. He gave me the diagnosis of SOD. Mommy was very confused and cried for days. She said that I was such a beautiful and happy baby that this was just impossible to believe. The medical jargon didn’t make any sense to us and the doctors didn’t really explain a lot about what to expect for me in the future. My eyes were getting worse, they both wandered to the top left corner. At eleven months I had my first eye operation to horizontally center my eyes and then I was fitted with glasses. I was so cute in them and I kept them on wonderfully since now I could see the world so much better. I wore a patch over my good right eye to strenthen the muscles in my left eye. Although I am legally blind with no prephrial vision or depth perception I manage quite well. Mommy couldn’t wait for the day that I would walk but I wasn’t in any hurry.
Up to age three I grew rapidly, within the 90% range for my age and I was so smart. My Grandma taught me to read Dr. Suess books when I was four but that is also when I stopped growing. So off we went to see Dr. Willis my endocrinologist at the Medical College of VA. Dr. Willis said that I was hypothyroid and put me on Synthroid. My bone age was 1½ years behind and I got sick a lot with ear infections. At four I had my second eye operation to center my eyes vertically and to limit the jumping and scanning before I went to school. I started kindergarten at 5 ½ and loved it but the teacher said that I was having problems with processing information, low muscle tone, and trouble with making friends. Oh, I have a lot of friends that like to help me in class but I have trouble being a friend back. I love to flap my hands a lot, which is strange to other people but it calms me down when I get upset or too excited. I also like to do things over and over and I am never in a hurry. I love to learn about space and the earth. I know all the planets and all the continents and most of the fifty states. I also like bugs. I have over 500 toy bugs and know all their names and what they eat and everything else about them. I also like the color green. My room is green along with just about everything else I own. My mommy only gives me green pencils for school because those are the only ones that I don’t lose.
At the start of 1st grade I was put on Levoxyl because I was finally growing a little and needed a larger dose for my hypothyroid. I also started having headaches and fevers for no reason. The school started testing me to see how smart I was and they found out that if I had more help in class from a vision teacher that I was even smarter. I was still having trouble making friends it seemed a lot harder in 1st grade. The kids call me names and sometimes I go home and cry but I do have some friends that still like to help me find my classes. I have been having trouble writing and reading fast in the class so the school gave me an OT teacher who teaches me how to write correctly. Although I am A/B honor roll Mommy said that I was not working to my full potential. By the end of 1st grade I was approved for an AID in the classroom to help me with organization, enlarging materials, and to keep me focused.
Mommy has been doing a lot of research to help me learn and she said I show signs of Aspergers Syndrome, which is a form of high functioning Autism. I have a quick temper, and I flap my hands a lot more now. I don’t always understand how other people feel, and I believe everything everyone tells me and I don’t like nicknames. I don’t like to look at people when they talk to me Mommy has to keep reminding me to be polite and not interupt others but I am still working on that. I still have trouble throwing and catching a ball, riding a bike and walking without falling sometimes. I try to be funny and I laugh when others do, but I don’t always understand when others are making jokes. I get very frustrated when my little brother doesn’t want to do things the way I like to do them and I hurt him even though I know that is wrong. I don’t like Daddy to play with me, he is too rough but I like to hug sometimes if I am doing the hugging. Mommy says that I was such a happy baby but I don’t smile very much anymore unless I get to do things I like. I love to play video games and I am very good at them. I like to repeat the same level over and over again until Mommy says that I should move on.
I just finished second grade and I received a trophy for getting A/B honor role the whole year. Mommy was so proud. I am ready for the third grade now. Mommy when to an IEP meeting at my school and I will have an OT, VT, PT and a one on one aid to help me in the classroom. Wow, a lot of people really want to help me. I am even learning to type and read Braille. I have been on Growth Hormone shots since April 1999 and I am growing like a weed again. I have changed three shoe sizes in two months. I don’t mind the shots much. They pinch but I want to be big like Daddy who is 6’3" so I will keep taking them.
Now Mommy wants to say something....
"It will never cease to amaze me what my little guy has gone through so
far and how much he has taught me about living each day one at a time
and enjoying every minute to its fullest. No matter how far he goes in
life he will always be my "little rocket scientist". And I thank everyone
in this support group for all your help with coping during the hard times
and helping me see Dustyn in a whole new "light".
This is me at age 2 with my Mommy and Daddy!
This is me at 4 with my new Little Brother:)
This is me NOW I'm 8 years old !!
