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.

Saturday, January 24, 2009

What did mommy do...before and after pics

This is kind of a funny story you see. Mommy was giving me a nice little boy haircut and it was so very cute and boyish but seeing as how it's hard to hold my head up anyways I moved and this is how mommy tried to correct it... (see first two pics). It wasn't totally bad looking but as you can see mommy had to go ahead and shave my whole head so that it would be more even and grow in better... (see last 2 pics). I think I look more like my daddy with my head shaved and almost balled. :-) Now...daddy would tell you a different story and say that mommy just messed up my haircut and I didn't move at all. So...what's the whole truth? Well, we'll just keep that between all of us and let mommy and daddy duke it out. :-)

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Pat said...

He looks adorable as always.

Michele said...

Auntie Michele likes the last two pictures best, where you're bald. You look like a Chinese Shaolin Monk, ready to do karate. You need to watch them on Superstars of Dance on Monday nights and see them in action. You could be right on stage with them!