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, December 13, 2008
Thursday, December 11, 2008
Hey Everybody. It's been a few weeks I know but I have been keeping mommy and daddy busy. I first want to start off by saying though...HAPPY BIRTHDAY TO NANA. It's nana's birthday today and I hope she had a good one. Well, I have gotten my trache changed to the next size up so now I have a pediatric trache instead of a neo trache. All that means is that I'm growing and I had to get a longer size. I saw Dr. Levey at Kennedy Kreiger Institute in Baltimore on Tuesday and he thinks I'm a little overweight for my height. Now go figure that one out. :-) He seems to think I am doing well though and he said again that I have done far more than any doctor wanted to give me credit for. God is just so good! I love Him. Mommy sings the song "Jesus loves me" to me every now and then and I really like that song so if Jesus loves me then I love Him too. I had to have my phenobarb medicine increased and that seemed to have helped with some of my seizures. I've still been having some more frequent pass out seizures and shaking seizures and stuff but I had a neurologist appointment today and he increased my other seizure medicine called Keppra and seems to think that will help control my seizures. Because I have gotten bigger then the need to have things increased is inevitable. It's still mommy and daddy's prayer that maybe I can get off my phenobarb all together. That would be nice because that medicine has a lot of nasty side effects. So, hopefully within the next month or so we should see some difference in my seizure activity. I have to increase the Keppra slowly and so it will take about 4 weeks before I am on the full new dose. It wouldn't even be a consideration to take me off Phenobarb until I'm probably at least 2 years old or so. Other than all that things have been going pretty good around here.