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.

Tuesday, June 10, 2008

June 10, 2008

Hey There Everyone. It's sure has been at hot one the past couple of days. We have survived the best that we can though. Mommy and daddy have been using the window air conditioner and it feels great in here until about 2:00 to 6:00pm and then it get to be very very hot in here. Mommy blows a fan on me which seems to help most of the time and then when it starts getting really hot and I get hot then mommy has to use the vest but that's ok because it works. Mommy has had her hands full with me today. I have been very fussy today. My gums were bothering me this morning and then I didn't like those storms that came through and then I got gas and got into that vicious cycle tonight with being fussy and then getting worked up and then getting hot and then getting more worked up and passing gas and then getting hot. It's so fun around here sometimes. I had my bath and then mommy put my vest on me and now I'm cooling off nicely on the floor with the fan blowing on me. After my long day I should sleep good tonight. At least I hope so. At least we'll get some relief from the hot weather tomorrow. I have still been turning myself over and today I was propped up on the pillow on the floor and next thing mommy knew she turned around and I was over on my tummy on the floor. I had rolled off my blankets onto the floor and then was trying to keep going and turn myself back onto my back and I bumped my little noggin on the floor. It didn't really hurt but I think I scared mommy though. :-) Mommy is working on making my play area bigger. Pretty soon I'll be taking over the whole living room. :-) You just wait and see. :-) Goodnight everyone.



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2 comments:

Anonymous said...

It felt a lot better at your house this morning David. Hope it stays nice and cool today. Grandma loves you!

Michele said...

I'm going to start calling you Roly Poly! Or Apple Turnover! I bet you really are keeping Mommy busy, huh?