Good evening everyone. I hope your day finds you well. I did pretty good today. I was actually cold most of the day and very fussy and constipated. Mommy gave me a suppository which helped a little bit though. That dog on wind...I'm beginning to not like it very much at all. Mommy had her hands full today trying to help me get comfortable. We got to go over to grandmas again today to have Uncle Frankie's birthday dinner this evening. It was so much fun except for the fact I got hot. It was funny because as I said I was cold all day so mommy had me bundled up and I got to get outside again as mommy walked me over to grandma's in the stroller. Well, just a minute or so after being in grandma's house I got really hot so mommy had to strip me down to my little onesie. Grandma was cooking which made her house a little warmer and she thought she would be nice and turn her furnace up since I was on the cool side. I guess I'm just more used to mommy and daddy's drafty trailer that I got hot when I went into a nice warm place. Oh well, all is good though. I did have to have another bath though and am back down on my play mat so I can cool off and relax. So, I'm calming down and hope to sleep pretty well tonight. I didn't sleep so good last night. I hope everyone has a great evening and will see ya later. Mommy put pictures of Frankie's birthday and I'm in the pictures too so check them out. :-)
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.