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.
May 13, 2008
Good evening. Today was a good day for me. I had a lot of fun today. Aunt Roof had off work today so she came over for a little while this afternoon and so mommy and I went with her to K-mart and to the bank. It was fun to get out for a little bit and the ride put me to sleep. I was asleep when we came back home and so mommy just left me in my car seat for a while and I rather enjoyed it. My occupational therapist also came over today and boy did I ever impress her. I was just a happy little boy. I was smiling and laughing and just having a good time. She is pleased at how well I'm still pushing up and holding my head up when placed on my tummy and today guess what I did...You will like this one too Aunt Michele...I actually was trying to crawl and doing that motion and then I just got both of my knees under me and moved myself a few inches. I was going to keep going but mommy had to bring me back down to the bottom of my mat because I would have been on the floor. And tonight though I actually was moving myself a little bit with the crawling type motion. It wasn't a whole lot but I'm sure determined. Having said all that...I'm moving around a bit more now and so mommy had to make my play area a little bigger so I can move around a little easier. I wasn't so sure about it at first but I think I like it now. Mommy thinks it will also teach me to maybe find my toys and grab onto them with them just laying there next to me instead of hanging over my head. We'll see what happens. Well, that was pretty much my day. My temperature has been great today and haven't been on either extreme. I've been right in the middle. :-) Well, gotta go now but I'll talk to everyone later. Goodnight.
1 comment:
Hooray, David!!!
Love,
Aunt Michele
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