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, April 8, 2008

April 8, 2008

Good evening everyone. I had a good day today. I actually played on my play mat most all day today. My occupational therapist came over today and she was very pleased at how well I was doing. I am moving my arms to reach my toys and hitting them and grabbing hold of certain ones. Can you believe it? I stood up for a little bit today too. I'm getting stronger at putting weight on my legs and standing there for a little bit. My temperature has been really good today and mommy hasn't had to give me any extra baths or anything. Pretty cool huh? Well, I have my appointment on Friday April 11 at Johns Hopkins to see a reconstructionist about my nose and then on April 15 it's back down to Johns Hopkins to see the GI doctor about my G-tube and perhaps getting a different kind. I have a busy few days coming up so that should be quite fun. Talk to everyone later.



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