Today was a pretty good day for me. I slept until about 9:00am and then of course I threw up on mommy again this afternoon so I had to get a bath. My temperature has been good today too although now I'm starting to get just a little bit hot. I had fun playing outside today and I liked the sun and the cool breeze on my face. I really like being outside. I can't wait for the warmer weather to come but not too hot. Today was perfect temperature for me. We even got to be outside when daddy came home this evening and that was cool to be able to do that. I think we surprised him. I hope I have a good night because I have to get my rest so I can have fun and be awake at Uncle Frankie's birthday dinner tomorrow. I can't wait. Hope everyone is doing well and I will catch everyone later. Pray that the wind doesn't effect me too much tonight because I really don't like the wind. It always makes me more fussy and add teething on top of all that....well....makes things interesting for mommy and daddy. Bye Bye now.
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.