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.

Tuesday, June 17, 2008

June 17, 2008

Hey Everyone. Boy have I been fussy for mommy today. I have had lots of gas today and so that go me worked up and my temperature to go up so mommy had to get the vest out and use it and we even got in the hot tub too to cool off a little bit and that seemed to help. It was very relaxing. Grandma came to see me this evening for a little while and I liked that very much. It was fun seeing her this evening. Although, grandma is a little bummed out because someone stole their golf cart the other night!! Grandma and pop pop depended on that golf cart for a lot of things especially grandma with her bad knees and couldn't walk that far would use the golf cart to come over to see me a lot of times. And now, I don't get to have any golf cart rides either and that really helped me settle down most of the time too was to just go for a ride on grandma's golf cart. I doubt they will ever find it but I really pray that maybe it will turn up very soon. I don't know what we will do without it. Oh well. Well, that's what's been happening around here the past couple of days and I hope that I start feeling better soon too. I gotta let mommy go now so she can change my food bag. Later everyone.



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