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.

Thursday, June 12, 2008

June 12, 2008

Howdy there everyone. I was a pretty good boy for mommy today but I was still kind of juicy at a few points in time. I got a little hot this evening though and so mommy and daddy gave me my bath early and I had my cooling vest on and some Tylenol. I soon settled down but it wasn't until mommy and I went over and saw grandma. We needed to take grandma some coffee and figured we would cheer her up and that we did. She got to settle me down so that made her feel better. Thanks grandma. Mommy and grandma also got to looking at some old pictures and mommy found one of her when she was little that looks just like me. It's kind of scary. Mommy and grandma had fun reminiscing though for a little bit this evening. I am now back home and have had my 9:00pm medicines and getting ready to go to sleep so I will talk to you later. Goodnight.

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