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, April 15, 2008

April 15, 2008

Well, while everyone else was busy at the last minute with their taxes I got to spend my time at Johns Hopkins. I saw the GI doctor today and I got my new "mic key" button tube. This is what my feeding tube now looks like as you can see from the pictures. All they did to take the other one out is pulled it. Yeah, you heard me...they just pulled it right out through the little hole in my tummy. OUCH! It wasn't too bad though. It only hurt for a short time and now it is a little sore and will be so for a little while. Mommy and Daddy have a little getting used to with this tube but I'm sure they will be alright. See, this tube is only held in my stomach with a balloon that is inflated so that it doesn't come out. And it can be changed from time to time. But, as much as I like to pull on it...I hope I don't pull it out. It's pretty neat though. See, now mommy and daddy can unhook the tube and just close it off and then no tubes will be hanging from me. It will make it nice for bath time and church time especially when G -maw McKenzie holds me. No one will have to worry about a tube hanging down now when I'm off my food. As you can see from the pictures after I had my button installed I had to give some blood too. I have had quite a busy day. I will let mommy stop typing now since she has things she needs to put away and relax a little bit so I will talk to everyone later. I should sleep tonight hopefully after the day I have had.

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1 comment:

Anonymous said...

Aww isn't he so cute. He is getting bigger and starting to give the same looks hid daddy gives. Finally caught a picture of him laughing. Poor aunt roof has been sick and busy, but she will have to go see the little squirt when she gets better. The cutie wootie little snicker doodle. Keep up that little snoot that you learned from Aunt Roof too. ;)