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, May 5, 2008

May 5, 2008

Good evening to all. I had a good day today. Boy did Aunt Michele keep me busy and working hard today. I had a lot of fun though trying to roll over again which I might add I did once again and then just trying to do it again and again. I am getting better. Sometimes it takes me a while and I have to work for it to turn over but am trying to get to the point where I can just do it without so much work. And you won't believe this either but I can put weight on my legs now and I was doing that again tonight and guess what...I actually walked up mommy's leg. Yes, you heard me...one foot went in front of the other. I think I shocked mommy so she tried it with me again and I did the same thing. We have witnesses too. Aunt Michele saw me do it so mommy is telling the truth. I didn't do it anymore after that but that's ok because now I know I can do it and if I want to do it again then I will. I'm just full of fun stuff and still surprising everyone. Mommy was so excited that I did that. We were over at grandmas tonight when I did it so she got to see me walk up mommy's leg too. Never underestimate the power of David Joseph Chiappetta! After supper tonight mommy and Aunt Michele played with me and daddy, grandma, nana, and pop pop played Parcheesi and guess who won...I can't believe it but Nana won the game and grandma came in second and then pop pop and daddy. It was a very fun evening. Mommy and daddy just gave me my bath and so I'm settling in a little bit and just hanging out on my mat. After all the work I did today I should sleep pretty well tonight. Well, only one more day with Nana and Aunt Michele and I am going to be sad to see them go. I guess they'll just have to visit more often when they can. And now that Aunt Michele sees what I'm capable of I know she will be keeping a close check on me seeing what I'm up to. Well, I will let mommy go now and will see you all later.



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