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.

Monday, November 10, 2008

November 10, 2008

Hello everybody. Boy do I have some exciting news to tell everyone. I got to go to church with mommy and daddy yesterday and I really had fun. I was in a good mood and smiling and laughing as well as I admit giving mommy and daddy a hard time during service by being very very active. So anyway, at one point mommy put me on the chair next to her since it was empty and since there is a little bit of a gap between the back of the chairs I reached my hands through there and grabbed a hold of it and was pulling myself along the chair. Mommy thought for a minute I was going to end up in the lap of the lady the next chair over. :-) And then this evening the lady that works with my vision came over and was working with me again and you won't believe what I did. Mommy and Karen (that's the ladies name) had me on my tummy working with me with the lights and things and I was doing great at pulling my head up and actually holding it up for a little bit. Well, after a few minutes of that I decided I wanted that darn light and so I was trying to move towards it. I was trying and trying to get my legs under me to try and crawl to get it but didn't really get there and then mommy and Karen just kept working with the lights and by cracky I was bound and determined this time so guess what...I actually had my legs up under me CRAWLING toward the light. I only moved just a little bit but I actually moved myself!!!!! As I was doing it mommy had to get daddy to come see and let me tell ya...it was a very exciting time for mommy and daddy and me this evening! I am doing well with my vision exercises and things. If some of you don't remember I have what's called CVI (Cortical Vision Impairment) and so I can see but can't really focus on things or see people like normal. I might see shadows or little movements and things like that. But with different exercises and things with red and yellow lights I can learn to use my vision better and so now like trying to crawl and go after things is a great stride in learning to use my vision because now with the lights I have something to "move" towards and want to go towards. Who knows...with more work and stuff I might even get to the point where I will be able to hold my head up more on my own. So again, we have had a really exciting night and Karen is pleased with my progress. The Lord continues to work as He is allowing me to do some little 'baby' things that the doctors never thought I would even do. Mommy and daddy thank the Lord for each and every new day and some of the new exciting stuff I'm learning to do. I may have a lot of "issues" and things and may take more work to accomplish something small and simple but the Lord has allowed me to do so. The Lord certainly is great!
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Pat said...

Praise the Lord for He is Good. God is a miracle working God and He has blessed David, Mark and Debbie with so much love and joy. We are so proud of all of you and love you all very much.
Mom and Dad

Auntie Foo Foo said...

WOW and Wow again! The Lord is truly wonderful! And, he keeps the doctors humbled!!!!!!

The family's little miracle!!!!

Love and Kisses!!
Miss You!!!