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.

Wednesday, June 11, 2008

June 11, 2008

Good evening everyone. I have had a pretty good day today. I haven't gotten too hot today so that has been a nice break for mommy today. :-) I have been really flemmy today though so I have had to be suctioned a lot so that has kept mommy and daddy pretty busy. I did though give mommy and daddy a good laugh tonight and I thought it was pretty funny myself. After I had my bath daddy carried me to the bedroom in my towel like always and layed me on my bed in my towel and I was getting really flemmy and bringing a lot of stuff up so while he was sitting me up mommy was getting the suction machine and helped clear some of my flem out but I was still coughing up some more flem and mommy sucked me out again and guess what...while all that was going on I was passing lots of gas and then...yep I pooped really really good and luckily the towel was still under me. They hadn't had a chance to put my diaper on me yet so I just used the towel instead. :-) Pretty funny huh? We all had a good laugh! Well, gotta get ready for nurse Brenda to come so I will talk to you all later. Have a great evening everyone. Nite Nite.

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