Hi, my name is David Joseph Chiappetta and I was born on July 27, 2007. I was born with something called holoprosencephaly and it means that my brain was not divided and I don't really have much of a brain. I do have a brain stem which controls my heart and lungs so that's good. My hypothalamus doesn't work either though so I can get either really hot or really cold very easily and quickly. Mom and Dad have to be my thermometer for me though which keeps them pretty busy at times. I also have a feeding tube in my stomach so I can eat since I can't swallow and I have a trache so I can breathe since I only have one nostril and it's blocked. Mom and dad have to suction me out too since I get mucuous buildup and have acid reflux. Sometimes I can keep them busy with that too. I also have Diabetes Insipidus which is a water issue and so I have to be given a certain amount of water with my medicines. If my sodium level is too high then that will cause me to have more seizures as well as if my temperature gets too high. I already have a seizure condition because of my lack of brain so some things can make it more complicated like high temperature and high sodium. See, my normal temperature range is 94 degrees to 97 degrees. Anything above that can cause me to have more seizures. See, I told you I keep my parents busy. :-) The doctors said though that I may not make it to birth and if I did I would only live a month or so. They also said that I will not be able to talk or walk or crawl or any of those normal baby things. Well, I'm here to tell you that I am4 years old now and I am learning to pick my head up when on my tummy! I'm also learning to put some weight on my legs and I laugh and smile. Cool huh? I just wanted to add that although you see mom and dad in the description above...it has just been mommy and me for a while now since daddy passed away in January of 2010.

Wednesday, April 23, 2008

April 23, 2008

Guess what everyone...I had a pretty good day today. My temperature was really good today. I took a little nap this morning from about 9:00am to 11:00am and then was awake the rest of the day. I rather enjoyed today and got to get outside as well. Mommy took me for a ride on grandma's golf cart. We even picked up grandma and she took mommy and me both for a golf cart ride. It was lots of fun. I really like riding on the golf cart and like the movement and the wind in my face. It usually calms me down and I just enjoy it and take it all in. There's just something about grandma's golf cart. Too bad mommy and daddy didn't have their own but that's ok we'll just borrow grandma's when she's not using it. After my bath this evening I curled up on daddy's tummy and slept for about an hour or so. It's about 9:30pm now and I'm awake and ready to party again. Hold on a second...daddy has to suction me out...Ok, I'm back now. When I first wake up I seem to be the juiciest with lots of suctioning. Again, my day was pretty good and I had a lot of fun today. I go see my pediatrician tomorrow for my 9-month check up and I have to get some shots so pray that I won't be too much of a handful for mommy and daddy. Last time I got 3 shots at a time I wasn't right for a week. Hopefully that won't be the case this time. And, if it does though this too shall pass. Goodnight everyone.



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