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.

Friday, March 28, 2008

March 27 and 28, 2008

Hello there everyone. Sorry mommy hasn't kept up with this the past couple of days but I have only let her get about 4 hours of sleep total in the past 2 days! Aren't I sooooo nice. I have been not too bad though and have really liked hanging out on my play mat or in my swing. My temperature has gone a little high but not terribly bad the past few days. I have had to be suctioned out a lot too though but I think the weather has a bit to do with that. See, I told you that I have kept mommy busy as she has had to suction me and change my diaper and hold me. I'm still a little bit fussy too but again it's windy outside. I think I will let mommy hold me for a few minutes and then it's off to bed for her. She needs to go to bed early tonight. I do need some sleep too though as I have been up since 7:00am Thursday morning and haven't slept since then. It's been crazy around here. So much so that mommy was trying to keep herself awake today so she decided to clean out the refrigerator and wipe everything down! Ok mommy needs to get off here so I'll catch up with all of you all later.



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1 comment:

Bonnie said...

Hey Deb,
Love all the new pictures! It was great to see you guys over Easter and finally get to meet David! I am glad we will be coming back down next month to see everyone again. Take care until then!
Bonnie