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.

Saturday, August 23, 2008

August 23, 2008

Hello everyone. I'm doing ok. Mommy had a rough night with me last night to say the least. It hasn't happened to me in a while but I just got really really hot and fussy and that just got the ball rolling. Mommy had to give me a nice cool bath and the cooling vest came out and mommy had to give me Tylenol. I gave her a hard time for a little bit. But, daddy got up about 3:30 this morning to help mommy out and helped calm me down. Daddy has his own little tricks to get me to calm down and for some reason he got me to calm down better than mommy did. Sorry mom, I really just missed daddy and wanted to spend some time with him so I figured I would throw a fit so that he would pay attention to me. :-) I am doing better today though and I'm going to be staying over at grandma's house tonight so mommy and daddy can get a little bit of sleep. Daddy actually "went out with the guys" and so mommy has some time all to herself. I bet she goes to sleep! :-) I do like to give mommy and daddy a hard time sometimes but that just keeps them on their toes. We are still working on the nursing situation and hopefully it will get resolved very soon. Pray specifically that people would do what they need to do and that things would fall into place and that we would have a nurse maybe Thursday at the latest. If you could pray to that end that would be great because this has gone on long enough. Well, I will let mommy go so she can go to sleep so talk to you all later.

Posted by Picasa

1 comment:

Michele said...

Cute new picture! Deb, I placed a little order with Avon online. You should get credit for it. :-) Love you guys!