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By Judi Pool
Sam’s grandma
After being home a few weeks, my grandma noticed I was not "tracking" with my eyes, so I was brought back to Children’s for an evaluation. After dilating my pupils, they found my optic nerves were smaller than usual (the left being even smaller than the right) and told my parents and grandparents I had optic nerve hypoplasia.
Months later, I began having seizures and chronic ear infections. No antibiotics worked for me. The ENT said she had never seen such a bad infection, and that the scarring caused the tympanic membrane to be 200 times as thick as it should have been! They eventually put vents in my ears. However, while in the hospital, they did not dilute my DDAVP, and gave me 10 times my dosage which caused very long seizures. I was "out cold" for four days, and would seize everytime anyone tried to wake me up. The neurologist put me on phenobarbitol until I was stabilized. A few months later they did an EEG and found the seizures were not just febrile seizures, and that I had epilepsy. I was then put on Tegretol.
I was not growing however, so they took an xray of my hand, and said I was not even on the growth chart. I was started on Growth Hormone, and am now in the 15 to 25 percentile for my age group of 3 ½. About six months ago, Synthroid was added to my daily regimen for hypothyroidism.
The above medical facts are about me, but are not who I am. I’m Sam, I am. (My family loves to kid about that). I have mom and dad, grandparents, and aunts and uncles who adore me and spoil me rotten. I LOVE music, dancing and swinging on my swingsets. Because I have a problem with depth perception, I do not take much interest in T.V. or books. But, if you play "Sweet Home, Alabama" by Lynyrd Skynyrd, I can really "boogie".
I used to hate grass or sand or anything under my feet. I also had oral tactile defensiveness about most foods (other than chocolate pudding), but now have learned to tolerate a lot more things with the help of my parents, grandparents, and teachers. However, don’t try to trick me by mixing meat with my mashed potatoes. It will come out faster than it went in! To make up for not eating meat, I do eat other protein foods like peanut butter, cheese, and ice cream. And of course, chocolate pudding!
My grandmother joined this group to find out more about septo optic dysplasia so she could help my mom and dad with my special care. But she says the best part of joining the sod list was finding so many friends all over the world who really "understand".
Dad, Me and Mom
Me, Sam doing my favorite thing in the world.....SWINGING!!!!
Me, Sam at preschool
