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.

Sunday, May 4, 2008

May 3, 2008

Yes, it's me everyone. Sorry that I haven't written in about a week or so but mommy and daddy have had me all last week by themselves because the nurse was out of town all week. There was no one to replace her so they had to do it. I did ok for a few nights but then on Friday I was up ALL night. So much so that mommy had to figure out how to stay awake so she fixed herself some coffee and bacon and a bagel at 2:00am. I will have to admit that it smelled good though. So again, mommy and daddy have been tired so that's why I didn't write. The nurse is back now and I am happy but I know mommy and daddy are very very excited because that means they can get some sleep at night. I have had such a great time so far though with my Nana and Aunt Michele. They have been getting to see just what I'm all about and a little bit of what daddy and mommy go through. It sure would be nice though to have my Papa here too because I really missed seeing him this time but as long as he promises to be here for my 1st birthday at the end of July then I think I can handle waiting to see him until then. And you bring me those golf clubs too ok Papa? :-) Well, I must let mommy go as she has to pick up a few things in the house before the nurse gets here. I will talk to you all tomorrow.

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