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.

Thursday, August 7, 2008

August 7, 2008

I know...long time no talk. Things have been crazy around here and we still have no nurse yet. It's some crazy stupid thing where the nursing agency has to get some kind of approval. It's just plain nuts. Mommy and daddy are hanging in there though and they are doing great at taking care of me. Although, I have been giving mommy a hard time the past few nights with not really sleeping but maybe 5 minutes here or there. I gotta be a bad boy some time don't I? :-) I'm never bad. Mommy and daddy came to the conclusion though that I am normal and everyone else are the ones with the issues. :-) I have been getting used to me new feeding schedule so that will probably take a little bit of time and then I'm sure I will sleep better at night. Mommy and daddy though just got me a piece of memory type foam stuff to maybe help me sleep a little better. Who knows. I have been really juicy though too and so that has definitely been keeping mommy and daddy very busy. Well, I'll let mommy go now because it's time for my 8:00pm feeding so I will talk to you all later. Goodnight everyone.

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1 comment:

Michele said...

Oh, little guy! I bet your new feeding schedule is throwing you off. Aunt Michele will pray you sleep better and get the nurse back soon.