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.

Saturday, November 22, 2008

Me In My New Swing Bed

This is my new comfy arms reach baby motion bed. It's kind of like a hammock type swing and it's supposed to help with fussy babies who have colic and gas and acid reflux and helps babies who don't sleep for long periods of time. From the first time mommy has put me in here especially to go to sleep I have not been quite as fussy and it is very comfy. The first night in it I slept more than my normal 2 or 3 hours. I think I slept about 4 or 5 hours and last night I slept about 4 or 5 hours in it too. Maybe once I get more used to it and know that when I'm in it it's time to sleep then maybe I might sleep a little longer. And sometimes when I'm just really fussy and gassy and just squirming around mommy will put me in my swing bed and I settle down considerable. I might still be a little fussy but not like I would be if I were out of it. :-) Mommy has also been trying to put me in it when I'm looking a little sleepy and it's either nap time in the afternoon or at night when I'm ready to go to sleep and I'll fuss sometimes for about an hour or so until I put myself to sleep but again it's not near as bad as it was. Mommy says that I look so much more relaxed and calm and even when I'm sleeping in it I look so much more content and peaceful. I want to say a BIG BIG BIG THANK YOU THANK YOU to Aunt Bonnie and Uncle Ryan for thinking of me and mommy and daddy and getting us this swing bed. It has been very helpful so far. So again thanks Aunt Bonnie and Uncle Ryan. We love you guys and appreciate what you have done.

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Michele said...

David, you are looking like such a big boy all of a sudden! My goodness, how you've grown. Thank you to Aunt Bonnie and Uncle Ryan from me also. I'm really glad the swing bed is helping you sleep better!

Aunt Michele

Auntie Foo Foo said...

:-) Aren't you becoming quite the swinger :-). Just a-swingin' :-)

Folks love you young man!