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, May 7, 2008

May 7, 2008

I am kind of sad tonight. Aunt Michele and Nana left today and I miss them. Aunt Michele was really good at working me out and playing with me on my mat. They both also liked holding me as well though so I didn't mind that at all. Aunt Michele, when you read this you are going to be so excited because guess what I did this afternoon? Yep, I TURNED OVER ONTO MY TUMMY FROM MY BACK AND GOT MY LEGS UNDERNEATH ME AND JUST ABOUT HAD MY ARM OUT FROM UNDER ME!!! Daddy got to see that one and for some reason when I did that I heard all this loud excited screaming. I must have surprised mommy and daddy or something. And this time when I rolled over it was fast and quick in one motion. I had a pretty good day today until later this evening when I got myself really hot because it was hot in here and so mommy and daddy had to do the bath thing and the vest thing and that was pretty much the evening. I just settled down about an hour or so ago and have been sleeping now for a couple of hours. That's ok though because I need my sleep plus I'll just get up and party with the nurse later. :-) I hope that I get to see grandma soon too because she has been very sick and she hasn't gotten to see me hardly at all this week. I know she is going through withdraw. She went to the doctor today though and found out she had severe allergies so hopefully she will get better soon. Well, I will let mom go and talk to you all later. Goodnight.

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1 comment:

Michele said...

I am SOOO excited to hear that! Awesome, David! I wish I were there to see it, but that's OK. Mommy and Daddy will just have to send me a video of you when you start crawling too! Atta boy, I knew you could do it. Love and kisses from Aunt Michele :-)