Mommy and I made a wall in the living room reserved especially for daddy. So a few days ago I finally got around to helping her put it up! Daddy really loved his sports and his teams for sure so it was only right to honor him in this way. :-)
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, March 30, 2010
Thursday, March 25, 2010
I now have my own little spot on mommy's bed. It is working out pretty well and mommy was nice enough to let me sleep on daddy's pillow and it is so very comfy. I like it a lot. Now I know why daddy liked this pillow so much 'cause it is very very comfy. It's been a lot easier on mommy because if I need suctioned out all she has to do is lean over and suction me out and even if I'm calm and awake she can still close her eyes and get some longer cat naps because she'll hear me if I make noise. :-) This has been one of the changes that we have made and I think I kind of like it.