Good evening everyone. I have had a pretty busy day today. I enjoyed some time outside today in my swing and enjoyed the nice breeze again. I was hot though so the breeze helped cool me off a bit. It was really nice in the house though since mommy and daddy opened the doors and let a cross breeze through. Mommy and daddy have to prop the doors open because the windows do not open and if we did open them they would have to stay that way. The breeze was nice. We also went over to grandmas and pop pop's house and played Uno Spin and ate some pizza and had coffee. It was fun watching mommy and daddy play the game and this time mommy and daddy didn't win at all. Of course, grandma had to win the most games. It was between her and Uncle Frankie. Pop Pop Bob didn't even win one game. Go figure. It must have been grandma's night or something. After a few hours of games as you can see I was just so exhausted and fell asleep right on grandma's dining room table. It was nice and cool though so it helped me relax because I was still so hot. So that has been my evening and I hope I can cool off some more and get some sleep tonight. I have a new nurse coming tonight so we'll see how she does. I always give new nurses a hard time so I'm going to try and be nice this time and give the new lady a break. We'll see what happens. Have a good night. Nitey Nite Nite.
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.