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, January 27, 2010
Hey Everyone...I just wanted to let everyone who is reading this know that I got my first tooth the other day...actually I have 2 of them to be exact. I have one on each side. Mommy posted a picture for you to see if you can make it out. I was not very cooperative with mommy while she was trying to take a picture. It is in a hard place to take a picture but mommy did an ok job I think. :-) My first tooth and daddy isn't here to see it. That's ok though...I'm sure there will be many more "first" things that I will be doing. I just have to remember that daddy is and was very proud of me! It's only been about 3 weeks since Daddy went to be with Jesus and mommy and I are doing ok. We both have our moments sometimes but who wouldn't? Mommy and I are still trying to get things settled and moved around here and stuff to make it "ours" and how we want it but there is so much to do. One step at a time though. :-) On another note though...I go see my pediatrician tomorrow and she will weigh me and measure me so that should be pretty neat to see how I have grown. My feet have even gotten bigger finally. :-) I will let you all know how long and stuff I am when I find out at the doctors tomorrow! Until then...Bye bye.
Monday, January 11, 2010
I know it's been a while since I've been on the blog and it's with sadness that I have to tell you that daddy went to be with Jesus on January 3, 2010! He was a great daddy and also loved mommy very much and he will be greatly missed for sure! With God though...we will make it.