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.

Thursday, May 22, 2008

May 22, 2008

Hey Hey Hey...It's skinny David! How is everyone this evening? I'm doing pretty well. Grandma came over and saw me this morning so that was pretty fun. After she left though I got myself all worked up and threw up and mommy had to give me a bath and use my cooling vest. I don't know...maybe I was trying to say that I wanted grandma to stay longer. :-) That's ok though because I got to sit on the porch with mommy this late afternoon and watch grandma mow her grass. I kept waving as she would drive by. We also got to watch daddy weedwack the grass. And then, mommy and I went over later this evening to grandma's house and surprised her and boy did we have some fun. I just had a grand ole time laughing and smiling and trying to roll over and pushing up on my arms. I entertained mommy and grandma while they had coffee that mommy made and some bread that grandma made. I'm back home now...well, obviously if I'm writing you...ok mommy is typing and I'm telling her what to say. I just had my medicines and still going strong at playing on my mat. I know, you're probably thinking that how can I be playing on my mat and yet telling mommy what to type...believe me I can communicate with mommy from laying on my play mat.:-) I might be up all night again or I might just tire myself out so much that I'll sleep good tonight. Only time will tell. I better go now and say goodnight to everyone so...Goodnight.



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3 comments:

Anonymous said...

Grandma LOVED having you just come over for a little while last night too! You can come over ANYTIME!!!!!

Love, Grandma

Anonymous said...

Hey David!!! Your are growing so fast. Your smile is infectious. When I see that smile, I smile. I know everyone else that sees it does the same!!!! I miss you lots. Looking forward to seeing you the later part of June.

Love You Kiddo!
Auntie Faye

aunt jenniffer said...

Hi Debbie & Mark - how big and cute David is getting. I love his hair. i'm glad everything is going good for you two. the photos are great.

love

aunt jenniffer