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.
Thursday, February 3, 2011
Hey Everyone. I know that it has been a really really long time since I have actually written on here so I thought I would sit down with mommy and update you all a little bit. I am still doing pretty good. The main thing that I have been dealing with is getting a sinus infection and I have been having quite a few more seizures in the past couple of months. After some bloodwork and phone calls and the helpful hospice Dr. and nurses we have been allowed to increase my topomax a little bit. If after a little bit that doesn't seem to help then we can increase it a little bit more and then if that is still not working then another seizure medicine will have to be added. Mommy and I are praying that this little increase in topamax will help. I have been on the 1st new dose for about a week now and it seems to be doing ok. I'm sure it's fun for mommy though because one day I may sleep all day and the next I might be awake all day or else awake and asleep. Not like she can plan her day ahead of time with me anyways 'cause you never know what to expect but then to throw in the whole maybe I'll sleep one day and be awake the next and give her a hard time I'm sure can be pretty tough sometimes. But she handles it very well and is just learning to go with it. :-) I do love my mommy that's for sure! Well again that is what has been happening recently and so hopefully I can get back to doing this a little more often.