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.
Monday, January 30, 2012
Hey There All. I have been very very fussy the past couple days and not sleeping very well for mommy. Although I don't sleep the greatest in the first place but I have been a real stinker lately and not sleeping for mommy. I can't help it though. She now knows why I have been fussy and it's because I just got another tooth through and am now starting on another one coming in. Not fun for sure. Top it off with me being very constipated for some reason and it just hasn't been a picnic around here. But mommy helped me today with my constipation issues and that seems to be better so maybe I'll be a little more easy on her tonight and let her get some decent sleep. Other than that I am doing pretty good. In the past few weeks I have become rather playful in my own way and just happy and smiling. Of course as I said with the exception of the teething and constipation. :-) Maybe there is something to this new device for my seizures. Only time will tell as we get closer and closer to having it adjusted where it needs to be. God is good though and He has given me another day so that is good. Another day to smile at mommy and give her a hard time and play with her. I know that she loves me too. Bye for now. Gotta get ready for vision therapy.