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.
June 18, 2008
Guess what I did to mommy and daddy again tonight? I pooped in my towel again. Mommy had just taken me out of the bath tub and daddy was drying me off in my towel when I started letting her rip with some good gas and then...yep...pooped right in the towel. :-) I like doing that to them. It's fun. :-) Well, I have had a good day again today and mommy really didn't have to suction me out a whole lot today which was good because that allowed her to get some housework and laundry done today. I was a good boy for mommy today. I also didn't get really hot or cold today. I was just right. I think this cooler weather helps with all that and plus the fact that I really wasn't fussy today. See, I give mommy a break every now and then. :-) Well, mommy has a few more things to do this evening so I will let her go and I will talk to everyone later.
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