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.

Sunday, April 20, 2008

April 20, 2008

Hi Everyone. Today was kind of a dreary day outside but I had a good time with mommy and daddy today. I was awake this morning for church and poor G-maw McKenzie wasn't able to hold me today. She had a very bad cold so she didn't come near me which is good 'cause I don't want to catch a cold. Mommy needs to start carrying around those little masks for people who have a bit of a cold and want to come near me. I fell asleep half way through service this morning and slept until about 11:00am. Since it was rainy and nasty outside this afternoon mommy and daddy decided to give me my first haircut. Can you believe it? They have wanted to do this for a little while now and so I guess today just presented the perfect opportunity. It was lots of fun though. I look really cool now and I love my new haircut very much. Check out the pictures below and you will see how very cute and cool I look. I'm one cool dude. I got a little hot this evening but mommy is getting good at what point to use my cooling vest so she put it on me for a little while and my temperature was down in no time at all. Have I mentioned lately that I love my vest? :-) Well, I'm about ready to fall asleep so I will get ready for bed and talk to everyone at another time. Have a great evening.



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2 comments:

Michele said...

Wow...It looks like Mommy and Daddy gave you a mohawk! But you look cute. :-)

Love,
Auntie Michele

Will said...

Hello, Debbie: checkin' out your site. It looks great. Good work. -- Will