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, May 28, 2011

Hey There everybody. It has been a while I know. Things have just been crazy around here what can I say. Story of my life though. To make a long story short my neurologist is starting me on a new medicine and taking me off one of the other ones. It is about a 3 to 4 month long process and we are only at week 3! Got a ways to go. This week has been really awful due to the fact that this is the 3rd urinary tract infection that I have had in about 2 months and the antibiotic that I am on for this one has an effect on my seizure medicines. The antibiotic decreases the potency of my seizure meds and this is right when I'm starting my new seizure medicine. So we have to ride out the rest of the weekend and hopefully since Monday is my last day of the antibiotic we will start to see improvement with my seizures and hopefully I can get back to sleeping. If not then I guess we need to re-evaluate my seizures. About the only 2 things keeping me pretty satisfied and not too fussy is me being in my swing and mommy playing my message from Grandpa Ayers. Hopefully things will get better soon.

Swinging away

I was so hot the other day mommy had to put me on the floor with fan blowing on me with a cooling type mat mommy found that you get it wet and wring it out and it draws the heat away from your body.

After a while of fussing on the floor being hot mommy played my own special message from my Grandpa Ayers and it really helped to take my mind off being hot and I like hearing Grandpa's voice.

And now I'm mad again because she took the phone away. I wanna hear it again mom!