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.

Wednesday, February 11, 2009

My Stander

I just got my new stander yesterday to help me learn how to stand up better and put some good weight through my legs and feet. Am I starting to look more like a big boy now? As you can see in the pictures I certainly have a lot of room to grow into this contraption. :-) Yesterday my therapist spent time setting it all up and mommy and her had me in and out of it getting the adjustments right for my height. And finally...success. They put me in it and left me there for about 10 minutes and I did good. We have to start out by me just being in it for like 10 minutes at a time working up to about a half hour. Because I'm now standing and in an upright postition it makes my heart work harder so we don't want to overdue it. It's also good for strengthening my heart muscles and all. You probably can't tell from the picture but it is tilted back a bit. It will raise straight up but again I have to work towards that because we don't want to overwork my heart. I think this is a neat little contraption. :-)


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1 comment:

The DeMotte Six said...

David, you do look like such a big boy standing there! And so cute too! We are proud of you little buddy!!! Good thing you have those cute little shoes on! Thanks for coming to Dan's party. It was great to see you, and you certainly were a big hit!!! See you soon!