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.

Thursday, April 17, 2008

April 17, 2008

Hi Everyone. This has been a busy month for appointments it seems like. Today I had my appointment with the neurologist and he seems to think I am doing very well. Since I have been on Keppra for my seizure and been weaned off the ativan I have been doing so much better and haven't had as many seizures. I put my cooling vest to good use today since I got a little hot going to see the neurologist. When we got there we went inside and mommy signed me in and then it was put on my vest. I'm sure people were kind of wondering what mommy was doing but it made me feel so much better. It cools me off at just the right amount and not too fast either. So, thank you very much to Debbie Naquin from MSCooling who custom made me my cooling vest since no one really makes infant size cooling vests. If anyone is interested in one or what it does and all or know of someone who might benefit from one you can check out her website at www.mscooling.com. There is lots of neat stuff there even heating vests and blankets. My neurologist was even interested in what the vest was all about and so I gave him the website. I need to find a little cooler of some sort though so that mommy can keep the inserts cold when we go out for long periods of time somewhere. She has a lunch box that when you put it in the freezer it gets really cold and frozen so she has been using that for now and that's what she used when we went down the road today. It works pretty good and it kept the inserts pretty cold but just not sure how it would do for a longer trip like to Johns Hopkins but we will cross that bridge when it comes. Mommy is usually pretty creative. I'm just very happy about my vest and I think it will come in very handy for the summer time because then I will still be able to go outside and enjoy being outside some. Mommy and daddy's trailer isn't very cool during the summer anyway because they only have a little window air conditioner which doesn't do a whole lot so I'm sure I'll be living in my vest and it's good that I have an extra set of inserts. After we got home from the doctors mommy gave me a nice bath and put me on my play mat and within a few minutes I fell asleep and took a nice nap. It's about 9:30pm now and I'm waking up and getting juicy so that means daddy and mommy are busy suctioning me out and I'm sure I will be up for a while now so my nurse should have a fun night with me. :-) I had my nap and now I'm ready to party. I will let you go now so I can go get my party started. Good night everyone.

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