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.

Sunday, August 31, 2008

August 31, 2008

Well, I stayed at grandma's last night and I hate to say it but I was up all night for her too. Sorry about that grandma. At least mommy was able to get a good night sleep. Mommy and daddy got me a new pair of shoes to try and I think I look pretty darn studly in them what do you think? If anyone is interested as I know some of you are I wear an infant size 1 in shoes. Also, if anyone knows of someone or has one or wants to get one mommy is looking for a walker for me. It doesn't have to be anything fancy or anything like that. Just something I can sit in and learn to sit up straighter and maybe learn to walk and move a bit. Tomorrow for Labor Day we are having a good 'ole party over at grandma's. My Aunt Roofies birthday was last week so we are having her birthday dinner as part of our Labor Day festivities. It should be lots of fun. Since daddy has that day off too I get to see him all day and spend some time with him too. I just can't wait until regular season of football starts and I can watch some football with dad watching the Florida Gators play college football and the Dallas Cowboys play the NFL. Well, I'll let mommy go but I just wanted to say a few words and let you see my new shoes. Talk to you all later.

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Auntie Foo Foo said...

Hey there big fella :-)

Good looking shoes!! Tell mommy and daddy I said Hi!

Love Ya!

Kristen Gillmore said...

Hey, I have size 1 shoes! Anthony is too big for them, and hasn't worn any of them at all! Let me know and I'll get them to you.

Kristen Gillmore

Michele said...

Hi, buddy!

I love your new shoes, and your new blue outfit, and the pictures of you with the teddy bear too. You're too cute!

Love you! (And love to your mommy and daddy too).

Aunt Michele :-)