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, September 7, 2008

What am I doing?

Yesterday I was in my seat and fell asleep and next thing mommy knew she looked over and this is how I was sitting. I slept like this for a little while and then managed to sit myself back then. Mommy thought for sure I was going to fall out. I have been doing pretty good and have slept pretty decent for mommy and daddy this weekend but still not the greatest. Mommy and daddy do a lot of shift sleeping on the weekends and this weekend we even gave grandma a break and she didn't watch me on Saturday night because mommy and daddy wanted grandma to be able to go to church if she wanted to. I got to go to church this morning with mommy and daddy and grandma. It's been a while since I've been to church and yet mommy still had to stay out in the foyer with me but sometimes that's to be expected. I was kind of juicy today and needed to be suctioned out a few times during service so mommy just decided to stay out in the foyer with me as well as I was really gassy. Well, I just wanted to check in with everyone and say hello and let you know what's been going on. We still have no nurse (surprise surprise) but they are still working on it. So, what can you do. Well, I gotta go now so I can watch the Cowboys with daddy. I hope they win. I got to see some of the Florida Gators play yesterday and they won! Sorry though to all those WV fans who had to watch their team lose. Talk to everyone later.

Posted by Picasa

No comments: