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.

Monday, April 14, 2008

April 14, 2008

Good evening everyone. Hope this evening finds everyone well. I have done pretty good today and my temperature has been pretty stable except for a little bit of time where I was cold and mommy had to put 3 blankets and a heater on me. My cooling vest came today so I'm very happy about that and I know mommy and daddy are just as happy. Before going to Texas nana and papa got me this music thing that when you push a button shaped like a seashell it plays music and fish move around and it lights up. Well, I have been pushing the button all afternoon and this evening and making it play music and making it stop playing the music. So, thanks nana and papa, I like it very much. Well, I have my GI appointment down at Johns Hopkins tomorrow at 3:30pm so it will be a long day and pray we don't run into a lot of traffic on the way back home. Good night everyone.

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