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, May 20, 2008

May 20, 2008

Well, mommy and daddy have one more night without the nurse. I know that mommy is very exhausted since I really haven't been sleeping too much at night so I'm glad she only has one more night and then tomorrow night she can hopefully catch up on her rest. I have really been a good boy for mommy and daddy so far. I have been trying to turn over again this evening but can't make it all the way over tonight. I'm getting good though at rolling from my tummy to my back with no problems at all. I gave mommy a shower tonight though...I know...as if she needed that tonight right? I had just had my bath and mommy was drying me off and got ready to put the diaper underneath me and had my legs raised and all of a sudden I heard daddy yelling "whoa." It was really a funny moment and so then mommy had to wipe me down again with the washcloth because I got myself pretty good too. We all had a good laugh. I guess you had to be there. Hope everyone is doing well. Goodnight everyone.

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