Hey Hey Hey Everybody. Guess what? I just taught mommy and daddy a very important lesson today! WHEN IT'S HOT NEVER LEAVE HOME WITHOUT MY COOLING VEST!! Here's how it went down. We got home from church today and mommy and daddy decided that they needed to go run a few errands and so they decided to take me with them. Not a bad idea because I like going places with mommy and daddy. Well, mommy changed my clothes from church and put a cut off onsie on me and noticed I was starting to get very hot because it was so humid outside and hot in the house too. I was starting to get fussy like I do when I get hot and having some more seizures but mommy and daddy thought that the air conditioner in the van and in the store would help cool me off. Well, I got news for them...It didn't. :-) When we were in the store I started getting fussier and louder with my squealing and I was just not happy. So, mommy and daddy quickly finished up what they needed to do and then they had to stop at Food Lion and daddy had to run in quickly and get me a bag of frozen corn. Yeah, you heard me...frozen corn. He put that on me and that helped a little bit until we got home and then it was in the bathtub and then on the bed in mommy and daddy's room where they were trying to cool the room off with their little air conditioner and the fan and that still wasn't the greatest so grandma called and guess what...mommy had to take me over to grandma's since it was very cool in her house and it still took me a little bit but with some Tylenol and laying on the nice cool floor at grandma's I soon cooled off and mommy and daddy came back and got me around 6:00pm this evening. See, I told you that once I get hot that's it...it usually takes a while to get my temperature down depending on how hot I was in the first place. That's why mommy and daddy try their hardest not to let me get so hot. Oh well...I bet next time they take the cooling vest when it's hot out. :-) Well, it's medicine time and daddy's getting that ready so I will go so he can give me my medicines. Talk to everyone later.
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.