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.

Tuesday, July 1, 2008

July 1, 2008

Boy, where in the world did June go? It's hard to believe that at the end of this month I will be a year old! Mommy and daddy are going to have a special party for me and my Nana and papa and hopefully aunt Michele will be here. Well, I had fun again today with Auntie Foo Foo and cousin Alysa. And guess what Alyssa did today for me...she suctioned me out all by herself. Mommy was getting my medicines ready and Auntie Foo Foo wasn't sure about it so Alysa stepped in and did it all by herself and did a good job. She also did it again this evening too. We have been teaching her how to do it the past few days and today she just stepped up and did it. Thanks Alysa. Mommy and Alysa colored again this afternoon while Auntie held me for a while. I was in a relaxed mood today and just not feeling too good. I have been slobbering a whole lot today and my toofies are bothering me. While we were over at grandma's this evening she put some orajel on my gums and that helped settle me down and I went to sleep for a few hours. I also had a little bit of grape juice from my bottle. Just a few sips but it helped my mouth feel better. I didn't know that grape juice was a little bitter but I soon found out. :-) Well, goodnight everyone and I will talk to you later.

Posted by Picasa

No comments: