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, March 5, 2012
Hi All. Well, just to update you all on some things the most recent is that I have a urinary tract infection again. I started an antibiotic on Friday and have to do 10 days of it. The doctor put me on an antibiotic that I haven't been on before for my urinary tract infections so I guess she is hoping this one is stronger and will knock it out for a while. But today started the whole let's poop out my diaper and have big explosions from the antibiotic. Yep...mommy is in for a real treat. The fun has just begun in that department. Also, today I went and had my stimulator adjusted some more. It is now set to go off every 30 minutes and he increased the frequency (intensity) of it. I will go back in another 3 weeks for more adjustments. He said that next time he will probably set it to go off every 10 minutes and then for 5 minutes after that and then will keep it at 5 minutes for a while meaning months probably and then after we see how I am handling 5 minutes and how it's doing for my seizures he said we can look and talk about either taking me off one medicine or maybe decreasing the ones I'm on. We will just have to see when that time comes. So I still have some time ahead of me before any of that happens but we are getting closer. That's pretty much all the updates for now. I'm still giving mommy a hard time because I love her so much but she's cool with it. :-) I also have been staying awake most all day now for the past week or so and now it's working on getting me to sleep for a long extended period at night. It's a work in progress but ya gotta start somewhere. Ok then now that the updating is done I will catch you all later.