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.
April 22, 2008
Good Evening everyone. I'm sorry I didn't get to write last night but mommy and daddy were very busy with me trying to get me to cool off and settle down. I have been having lots of gas issues and that has been bothering me. I certainly kept mommy busy with all that today! I don't think she sat down once. Since 9:00am I have been cranky and fussy and passing gas. Go figure. All that then made me very hot and mommy had to change my inserts on my cooling vest like 3 times today. It certainly was a fun day with all that and then mommy had to give me 2 baths today but that's because I had myself all worked up and so naturally I threw up. It's such a vicious cycle sometimes. I have been a little better this evening though and haven't gotten too hot. I know mommy is very tired after this long day so I won't keep her on here too long and I am tired myself. Hope everyone is doing well. I get to see my cousins and aunts and uncles this weekend so that should be fun.
1 comment:
We can't wait to see you too Buddy!
The DeMotte's
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