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, July 25, 2008

July 25, 2008

Boy today was kind of a busy day. There were lots of visitors at our house today because of my birthday being on Sunday some people just popped in today since they won't be around on Sunday. Nana and Papa and Aunt Michele were over today too. It was great fun. Papa mowed all the grass and Nana even was on the mower too. I think Aunt Michele got a picture of that action. :-) I slept a good bit of the day but I think that's because I got a little bit cool and so mommy then had to dress me in some long sleeves and pants. It sure wasn't long after that though that I was warmed up. I think the bath mommy and daddy gave me helped me out too. We went over to grandma's house for dinner this evening and had some of Aunt Michele's meatloaf and potatoes and green beans. Papa also made a tomato salad with tomatoes and onions and oil and vinegar. Let me tell you what too boy, I had a taste of the dressing on the salad and I really loved it. I didn't even make a funny face other than my eyes getting really big and me wanting more. I'm getting excited to celebrate my birthday with a party tomorrow. It's a day early but we didn't want to have my party on a Sunday with going to church and all. It will be fun and don't worry...I will make sure mommy puts lots of pictures on the blog about the party so you can see how much fun we all had. Well, I gotta let mommy go so catch you all later. Goodnight everyone.



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