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, June 30, 2008

June 30, 2008

Hi There Everybody. I had a great day today. Auntie Foo Foo and Alysa came over today and played with me. Auntie had me laughing so hard today that I blew my himidivent off! My humidivent is what fits over my trache to filter out all the stuff in the air and provide moisture to my trache. Alysa was even holding me a couple of times today too and that was fun. Mommy also had fun this evening playing with Alysa over at grandma's and they made brownies and Aunt Roof came over for a little bit too. I do have fun with Alysa and Auntie Foo Foo and I'm sure they love me as well. Mommy had to smile today when Alysa came up to her in the kitchen and said, "Debbie, your little son is just so unresistable!" It was cute. For anyone who wants to know, Alysa is 8 years old so...out of the mouth of babes huh? :-) Well, I'm starting to get a little fussy now as we just got back from being over at grandma's and I'm starting to get a little hot so I'm going to let mommy go so she can get my vest and help me cool off so I will catch everyone later. Goodnight.



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