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, March 26, 2008

March 26, 2008

Hello everyone. Today I kept mommy a little busy. I am still very cranky and fussy and so pretty much mommy had to hold me all day because that's the way I was most comfortable. I don't think she minded too much though. I have had a lot more gas today too but then again it was windy today as well so that probably explains a little bit of that. My temperature also has been pretty good today. I think I might be getting another cold though because my nose has been running an aweful lot and then I get junk in my throat. Mommy has to suction me out too when that happens but I haven't given her too much trouble with that today...I've been rather nice about it. Well, pray that I sleep tonight for mommy and daddy's sake. Oh, and by the way, my appointment with the reconstructionist is rescheduled for April 11, at 9:30am.

Posted by Picasa

No comments: