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, May 24, 2008

May 24, 2008

I have had a pretty rough day today. My little toofies are coming in and they have really been bothering me today. I have just been very fussy and just plain 'ole don't feel very good. The only way that makes me feel at least a little bit better is to be held. Yeah...mommy and daddy and grandma are taking turns with that. I got to spend some time with grandma today while mommy and daddy worked around in the yard getting some things done that they have been wanting to get done. I had fun with grandma and she did her fair share of holding me too since it makes me feel better. I really do wish these darn things would just come in. Mommy can see the bumps but nothing poking through yet. I just say come on already. Well, mommy and daddy have their hands full the rest of the evening so I better let mommy go. Goodnight everyone.



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1 comment:

Michele said...

Oh no, David! Those teeth still haven't come in yet? That's no fun. Auntie Michele will just have to pray for those teeth, cause they need some help! You be good and sleep well for Mommy and Daddy tonight. I love you! (Tell Mommy and Daddy I love them too!)

Hugs and kisses!
Aunt Michele