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.
Too hot!
Mommy got creative yesterday when it was sooo hot out and I was getting very hot myself. Mommy would just leave me in my diaper but the only problem is I like to pull on my tube so sh had to figure out a way to cover it so I wouldn't pull on it. So...the first 2 pictures are the first results...mommy took a bandanna and tied it around my waist. Only problem...I liked to pull the knot and it wasn't very tight because mommy didn't want to get it too tight and so it fell off everytime I moved. So today...the last 2 pictures are the result of another step. Mommy had some velcro and used that and it seems to be staying a little better. It's a work in progress. :-)
3 comments:
Hey Deb! I'm at Tara's and she has wireless so I got to catch up on David's blog. You do a GREAT job of keeping it current. The new wheelchair is AWESOME and what a neat story.
Bet your mom felt pretty bad about the black eye:). All's well that ends well.
Tara had fun going through the clothes. She was so excited to have a cap that fits him. She worries about his head when they are out at the park. She'll take a picture and post it soon.
Sorry to hear about the Praise Band not working out. I know that you enjoyed doing that. But it was nice to see you across the church on Sunday morning. I can tell that David is getting taller.
Well, Hannah is mauling me as I type so I'd better get off. Love, Gerri
Wow! Look at how big you are, and you are definitely going to be crawling soon!
Aunt Michele thinks your Mommy should look into getting a patent for that little velcro thing so she can sell it online. Bet there's a lot of people who have feeding tubes who could use it!
I just can't wait to see him again and hold him and spoil him - hey, that's what grandparents are for! We should be finalizing our plans soon. Lots of love from us to you.
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