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, May 26, 2008

May 26, 2008

I had a very fun day today celebrating memorial day over at grandma's house. We had a picnic and at way too much. Well, everyone else ate but all I had was formula...YUK! :-) We had fun though. I got to watch mommy and daddy play corn hole with uncle Frankie and aunt roof and great great great aunt Frances. And guess what? Daddy and mommy beat Uncle Frankie and Aunt Ruthie's butt! :-) And then Aunt Frances joined Uncle Frankie's team and tried to help him win. It was getting rather hot though so I had to come inside and layed on the nice cool floor to cool off. I had my vest on for a while and so that helped me cool down a little and kept me from getting really hot. I got comfy and slept for a little bit while mommy played games with grandma and aunt roof and great great great aunt Frances. We are back home now and it is very hot in mommy and daddy's house so they have all the doors open and am feeling a nice cool breeze. I'm started to get worked up again though so the vest might have to come back out. At least we have the vest. I am trying to be a good boy too for mommy and daddy because they have me by themselves for the next 2 nights. My nurse will be back on Wednesday. So, I'll warn you ahead of time in case mommy doesn't get to blog tomorrow night it's because she is very very tired. Talk to everyone later.



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2 comments:

Cousin Paul said...

WEAR EM OUT DAVID! Good boy! Glad you guys had a good holiday. Man, what a smile.

Anonymous said...

So many cute pictures:)! Your mom told us about the vest. That was a neat story. We'll be praying for the June appointment. Elisabeth Duncan has been here for seven weeks. She will be moving back home tomorrow. We will be gone to Beckely and then Florida next week. After that maybe life will settle down a little. Take care. Gerri