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.

Thursday, November 13, 2008

November 13, 2008

Hi Everyone. I had my 15 going on 16 month check up today with my pediatrician. She says I am doing well and today I was wide awake and very active for her and I think she was amazed. :-) I am growing well and I now weigh 15lbs and am 25 inches long. Pretty cool huh? Mommy will put a picture on so you can see just how long I am getting. I did have to get 2 shots today though and one of them being the flu shot. I am not very nice to mommy for about a week or so after I get shots. :-) Although I think these are having the reverse effect on me because usually after I get shots mommy gives me Tylenol and then I usually fall asleep for a few hours and usually sleep pretty well that night. This time mommy isn't so lucky. :-) I have been awake and very active despite the Tylenol and have not gone to sleep yet. Hopefully though I will sleep tonight. The one shot that I got since I have a seizure condition I am not supposed to have it but I had already had one and the pediatrician thought that I really should have another round of it because I didn't do to badly with it before so I guess she figured that the good of the shot outweighs the fact that I might have a few more seizures for mommy and daddy for a few days or so. It hasn't really been too bad though for mommy and daddy but like any little baby I just am uncomfortable. But you probably couldn't tell by looking at me because I have been smiling and playing and very active since I have had my shots today. Again though...I do hope that I let mommy get a little bit of sleep tonight. All in all though I am doing well and growing the way that I need to. Well, I need to let mommy go so she can get my food ready to hook up so I will talk to everyone later.
Posted by Picasa

No comments: