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 18, 2008

May 18, 2008

Sorry that I haven't written in a while everyone but mommy was having issues with her computer. Mommy and Daddy have also been tired because of having no nurse and won't until Wednesday evening. I have been a pretty good boy for them though most of the time. Mommy has had to sleep in the chair with me at night so that both of us can at least sleep a few hours. Last night mommy and daddy slept in shifts since it was a weekend and didn't have to get up too early for church. Mommy will more than likely sleep out in the living room in the chair with me so that she can at least maybe sleep a couple hours and let daddy sleep so that he can go to work. That's what usually happens during the week when we don't have a nurse. Mommy and daddy take good care of me though and I really love them for that. They are such good parents. I have had a very good and busy weekend though. On Friday night I went with mommy and daddy to the new pizza place over by the new Walmart and then on Saturday I helped mommy put together a grill. Ok...so I watched her put it together for a little while and then daddy rescued me from the boredom and brought me back inside and let me play. I really do like helping mommy and I had fun with her. My temperature has been pretty good this weekend so that has been very nice. Still slobbering a lot so I'm still working on them teeth. I just wish they would come in already. Well, I will let mommy go since she has a few things to do before maybe going to take a little nap so I will talk to everyone tomorrow.



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1 comment:

Anonymous said...

Wow! You are growing SO fast. What a wonderful smile. You just show mommy and daddy that smile I bet it makes the whole day better! I guess I am little old and slow, I just noticed we could place comments! Love you guys...Cousin Paul

5/18/2008 7:02 PM

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