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.

Saturday, April 19, 2008

April 19, 2008

Well good evening everyone. I hope everyone's weekend is going ok so far. Mine has been pretty good. Friday was a good day for me and today isn't so bad either. Although, I was good all day with my temperature until just an hour or so ago. I started getting really hot within a matter of minutes and so mommy had to get the vest out and she got some pictures of me in it this time so you'll have to check some of the pictures out below of me in my new vest. It really does work great and I am so thankful to have it. It's just a tad bit big but that's ok because see now I can grow into it. I think mommy and daddy need to decorate it up somehow with stickers or something. I think that would be pretty cool...no pun intended. I still have my vest on but am cooling off very nicely. I enjoyed the nice breeze today. Too bad it's supposed to be raining tomorrow. Oh well, I can hang out with mommy and daddy all day inside then. That's perfectly ok with me. Well, mommy and daddy have a few other things to do and it's almost medicine time so I will let mommy go and see you all later. I can't wait to see Nana and Aunt Michele in a few weeks. Later everyone.

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1 comment:

Bonnie said...

Love the new pics! I see David has a Cars shirt! Jake and Ben would be proud! See you guys next week!
The DeMotte Six