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.
Wednesday, October 14, 2009
Hi All, I know it's been a while but it's been crazy around here. I have still been doing well being weaned off my phenobarb! I really haven't had many more seizures in the process either. That is a very good thing. I can't wait until I am no longer on it. :-) Mommy sat down the other week and figured it all out and it will be all done with on February 3 which happens to be daddy's birthday so I guess...happy birthday to daddy then. :-) I get a little fussy for a few days when the dose decreases but then I tend to get used to it and then it will change again and the whole process starts all over. :-) I keep mommy and daddy busy though. I am also believe it or not sleeping a little better now too and am still hoping that once I get totally off the phenobarb maybe I'll sleep even better. I know we are all praying for that. I am just getting over having a nasty cold. I was coughing/wheezing pretty bad so mommy had to use some breathing treatments for a few days and it got much better. I still am rather juicy most times but this thing takes a long time to get rid of...especially when your system is compromised like mine. That's why mommy doesn't get out much or even take me out hardly at all during the Winter time because I could get sick really easily and that wouldn't be good. So we stay pretty cozy. Daddy has also lost his job so he has gotten to be home with mommy and me all day! So...that's what's been goin on recently. Catch everyone later.
These were pictures that came about after my OT therapy this week. I was not in a happy mood as you can tell but I guess for mommy and the OT it made for some cute pictures. I had a good hold on that toy and they were joking that I was driving miss daisy. :-) Oh well...whatcha gonna do...I'm so glad I could bring them some enjoyment. :-)