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, April 11, 2008

April 11, 2008

Today was my trip down to Johns Hopkins with grandma and mommy to see the reconstructionist about my nose. He gave me some pretty good news. I have to go back to see him in 1 year so I can grow some more and get a little bigger. He made this seem like no big deal really. Most of my bone in my nose is there and he thinks he can use everything right on my nose to correct it and make it two nostrils and an opening instead of having to borrow cartilage and stuff from other parts of my body. And when he is done it will actually grow with me. Sounds pretty cool to me. I know that a year will go fast. This year is already going fast. He also encouraged us to still work with me on swallowing and all. So, we all know grandma...we had to come home and yes, she had to feed me two baby spoonful's of rice cereal and I actually had about 1/2 ounce of formula from my bottle. It actually really helped me relax and be comfortable and also helped with my seizures. I also played on my mat for a while then and as you can see from the pictures I actually have my fingers around the ring on my one toy and NO mommy didn't put them there either...I did it all by myself. That was the good part of the day. I have been a really bad boy for mommy and daddy this evening. I got hot and they have been trying to cool me off. I just need that darn vest. Hope it gets here soon! I started though when it first started storming here a little bit so maybe I don 't like storms either. Must be the change in the atmosphere or something. Yeah for mommy and daddy. :-)

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1 comment:

Michele said...

Hi, David Joseph!

I read all of your achievements this week. I am so proud of you! You're growing into a strong little boy, aren't you? And I'm so glad you got good news at the doctors. Tell Mommy and Daddy I said hi, and I love them, and I love you!

Auntie Michele