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, April 9, 2008

Outside Again

I got to hang outside for a little bit this afternoon. It was nice to feel the wind on my face and soak in the sun. I can't wait until tomorrow though because I hear it's supposed to be sunny and warmer. Maybe if I'm good tomorrow and not so fussy I might get to enjoy a little more time outside. I guess we'll really start to see how my temperature will do in this warmer weather. I have been quite fussy and very uncomfortable today but I didn't poopie at all yesterday so I think I'm a little bound up. Mommy has given me suppositories and even gave me some prune juice this evening and it seems to be helping. I have pooped a couple of times but I still have more in there. So to honor the words of Aunt Roof...COME OUT COME OUT COME OUT! (love you Aunt Roof) I do pray that I am feeling better tomorrow and then remember Friday I have an appointment at Johns Hopkins with the reconstructionist about my nose. Goodnight.


Posted by Picasa
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)