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, May 22, 2009

David liked watching his CARS movie



Can anyone say chunky legs?






Enjoying another cartoon.





I love this look of...ok mom what do you think you are doing?



Things have been going good still for the most part. I am still very active and mommy is kept busy through the day taking care of me. :-) We have been trying some Melatonin to try and help me sleep at night and I did really well after the first week for about a week but to no avail since. :-) I like keeping mommy and daddy on their toes. :-) Maybe Dr. Levey(from Kennedy Krieger) can recommend a brand or maybe I might even need more then the 3mg. Who knows...it's something to talk to him about which I will go see him in just a few weeks. June 9 I go back to KK to see how I'm doing. I have been loving the fact that I can get outside a little bit now and mommy takes me outside to play with me. Now is starting to be the time of year though that I pretty much just live in a cut off shirt because I can get hot very very quickly. Mommy would let me just be in my diaper but I have a tendancy to pull on my tummy tube and want to pull it out. So therefore, I have to at least have a shirt on. :-) I also got a little red outdoor swing which I like very much. Who knows...pretty soon mommy might have to get the little blow up pool out and fill it with water so I can play in it. Well, I just thought I would say a hello to everyone. Talk later.
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2 comments:

Anonymous said...

How cute can you get little grandson!!!!!!!!! Want to pinch those little chunky legs....... love you, grandma sharon

5/22/2009 12:06 PM
Unknown said...

Hooray! You got to watch Cars. I'm so glad you liked it, little buddy. Love you!

5/25/2009 10:39 PM

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