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.
April 7, 2008
Hey Everyone, guess what I did this morning? I TURNED MYSELF OVER FROM MY BACK ONTO MY TUMMY!!! That is just so totally awesome. Mommy was so very happy and it was a big moment to say the least. I also got myself onto my side a couple of times throughout the day as well. That was my big thing for this morning. The afternoon time and evening came and well...you probably guessed it...I got hot again. I think I have had a total of 3 baths today! At least I'm a clean little boy. :-) I'm in my swing now swinging away and very comfortable now and getting sleepy so I'm almost ready for bed. And speaking of bed, last night was my first night to be in my new bed all night and I slept really well from about 10:00pm to 3:30am. I slept for a few hours this afternoon too though so I have had my rest for the day. I hope I sleep well tonight too. I really like my bed and it seems to be very comfortable. I had a nap in it Sunday afternoon but last night was a full night in bed and I did well. Well, my cooling vest has been ordered and shipped so it should be here very soon and I can't wait to try it out. Maybe I won't have to have so many baths. :-) Hope everyone has a great night.
1 comment:
That's Awesome!!! Congrats little guy! So glad you like your new bed! See you in a few weeks!
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