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.

Monday, April 28, 2008

My cousin Danny

I had a lot of fun this weekend seeing my Aunts and Uncles and cousins. We had a lot of fun with pop pop's birthday party. I got to play a little bit with my cousin Danny. He is 2 months old and we weigh about the same too. Danny is my buddy. Both of us really didn't feel good this weekend either so I hope that Danny is feeling a bit better...I am feeling a little better. Grandma is also not feeling well and has a bad cold so needless to say she is not able to hold me much. You can pray for mommy and daddy this week because they don't have a nurse much this week at all. My nurse, Brenda, is away this week and other nurses have to do some sort of training first and who knows when that will be so mommy and daddy have me most of this week. Although, I get to see Nana and Auntie Michele on Thursday so that will be lots of fun. And yes Nana, I am doing back flips waiting for your arrival. I think you will be surprised at how big I am getting. Well, I gotta let mommy go so we can figure out the sleeping or lack of sleeping arrangements. Talk to ya later. Nite Nite.

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