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, June 15, 2008

June 15, 2008

Today was a fun day. We got to go to church this morning and celebrated Father's Day and G-maw McKenzie got to hold me in church this morning. I got a little juicy again this morning and she was holding me and so she took me out to the foyer and mommy went out too and showed her how to suction me. Now she knows how to do it and she said that now she won't have to bother mommy or daddy anymore because she knows what to do now and she can do it. :-) We came home from church and believe it or not we all took a long nap this afternoon. I fell asleep and so then mommy and daddy were able to sleep as well since I was up all night. :-) I'd say we all had about a 2 and a half hour nap or so and it was much needed especially for daddy and mommy. After we woke up we went over and saw grandma for a few hours and that's always fun seeing grandma. We came back home and mommy let me get in the hot tub again and she got me a blow up boat that I can sit in now and I was just kicking away. I liked my new boat. After the hot tub mommy and daddy gave me my bath and now I'm trying to wind down from the day in front of my fan on the floor. Boy, what a day. I will let mommy go now so she can fix daddy's lunch for tomorrow since he has to get up at 4:30am to go to work. Talk to you all later. Goodnight everyone.

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1 comment:

Anonymous said...

WHAT A CUTIE IN HIS SUITIE! You look like you are having a great time! Love you, grandma