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.

Sunday, May 11, 2008

May 11, 2008

Hi everyone. I kept mommy and daddy pretty busy this weekend. I did not sleep much at all this weekend. Maybe a few hours the whole weekend so we are all very tired. Today was a good day though because it was mother's day. Today in church mommy and daddy were part of the baby dedication at church to dedicate me. I really did pretty well and it was lots of fun. I have been very very fussy tonight though because I've been having terrible gas pains and it's no fun at all. I hope I get rid of them soon because now with me being fussy and all my temperature is up and I am wearing my vest. I just go from one extreme to the other sometimes. Well, the nurse is here now so mommy and daddy will be able to get some sleep hopefully and I hope I do too. I will let mommy go now and talk to everyone later. Goodnight everyone.

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