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Sean William McDonald
March 14, 2006
My Condition
I was born with Congenital Hydrocephalus with a Posterior Fossa Cyst and major brain anomalies which resulted in blindness and global developmental delays. The doctors still aren't very sure of what my condition really is because I am so special and unique. The doctors say I am one of a kind! My diagnosis is something called Holodiencephaly. This condition is very similar to the traits of Alobar Holoprosencephaly however its so complex its hard to say for sure what all I have.
I was born weighing 8 pounds and 5 ounces. Although I was a TINY baby at four weeks early, my head was very big due to the spinal fluid that had accumulated while I grew in my mommy's belly. I was 18 inches long and had tiny little hands and feet. My preemie clothes were way too big!
I had a shunt placed at just under 72 hours of age to help relieve the pressure being caused from the fluid accumulation. None of the doctors thought I would be strong enough to make it but here I am!
I have had 12 surgeries so far and most were for my shunt. I quit being able to eat much in 2008 and had to get a MicKey button too. Even though I am over 3 years old now, I can't sit or crawl or talk like most 3 year olds. Aside from my delays and other issues related to my conditions, I am actually a pretty healthy kid! I don't get sick very often and I do have a pretty good personality! Sometimes I get very fussy but Mommy and Daddy say that is okay because I have every right to be grumpy every once in a while.
I have two brothers and one sister so my mommy is a pretty busy lady most of the time but hopefully soon she can tell you all a lot more about me. She will put up notes from the doctors and some pictures and even what I way. If she has time she is even going to add resource pages for other mommies that have baby with stuff like me. Come back to check on me okay?
To learn more about me and my current development and daily living, you can see the "About Me" section of this site! (Caution mommy might be working in there!)
Current Age: 39 Months
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