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.

Saturday, January 10, 2009

January 10, 2009

Hi There Everyone. I hope this new year finds you all well. I am doing pretty good myself. I have been keeping daddy and mommy busy still but I don't think that will change. :-) I just had my bath and daddy just went to Dunkin Donuts to get mommy a nice good coffee so mommy and I thought we would take some time to update the blog. We have increased my seizure medicines because I was having more seizures but that seems to be more under control now since the increase in medicines. I have had a lot and I mean a lot of gas again which is not much fun for any of us. I also have a little bit of a slight cold I think and that's not much fun either. Other than all of that though as I said things are pretty well and busy here like normal. Last weekend we had all my Aunts and Uncles and cousins around so that was fun celebrating the new year with them. Well, I will let mommy go now since daddy is back with the coffee and I will let mommy enjoy it. Well, at least I will try and let mommy enjoy it. :-) Talk to everyone later.

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1 comment:

Michele said...

Hi, buddy. Auntie Michele loves you! You look so cute in all your new pictures. It looks like Mommy and Daddy dyed your hair blond, though. What happened? You're supposed to look dark and handsome, like all the Chiappettas!