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.

Thursday, August 14, 2008

August 14, 2008

Well, here's the scoop with nursing. Medicaid has denied me nursing in the home because they say it is not medically necessary that I have nursing. Go figure huh? This is just the most frustrating thing to say the least. There is some kind of appeal that mommy and daddy will have to go through but who knows how long that will take and when we would even have a nurse again. Mommy has been looking online about this special mattress that is supposed to help kids and adults with brain conditions and other things sleep better at night. The mattress though costs about $1500. Kind of pricey huh? All this good equipment for those who are disabled and yet no one can afford it. Go figure. If anyone would like to make a donation so that mommy and daddy could get this for me so that they can start sleeping at night too that would be nice. Just send any donation and mark it "mattress." Some good news though...I had my GI appointment on Tuesday at Johns Hopkins and he seemed to think I was doing well and was proportionate for my size and height. I now weigh 14lbs and am 24 1/4 inches long. I'm growing boy. I had 3 shots today too so pray for mommy and daddy tonight because I am usually very cranky and so pray that I would sleep good tonight and not be too bad for mommy as she is the one who has to stay up with me so daddy can sleep because he has to work. Well, I'm really starting to get fussy and I think I need some momma lovin' so I will talk to everyone later. Goodnight everybody.



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