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, October 14, 2009

Hi All, I know it's been a while but it's been crazy around here. I have still been doing well being weaned off my phenobarb! I really haven't had many more seizures in the process either. That is a very good thing. I can't wait until I am no longer on it. :-) Mommy sat down the other week and figured it all out and it will be all done with on February 3 which happens to be daddy's birthday so I guess...happy birthday to daddy then. :-) I get a little fussy for a few days when the dose decreases but then I tend to get used to it and then it will change again and the whole process starts all over. :-) I keep mommy and daddy busy though. I am also believe it or not sleeping a little better now too and am still hoping that once I get totally off the phenobarb maybe I'll sleep even better. I know we are all praying for that. I am just getting over having a nasty cold. I was coughing/wheezing pretty bad so mommy had to use some breathing treatments for a few days and it got much better. I still am rather juicy most times but this thing takes a long time to get rid of...especially when your system is compromised like mine. That's why mommy doesn't get out much or even take me out hardly at all during the Winter time because I could get sick really easily and that wouldn't be good. So we stay pretty cozy. Daddy has also lost his job so he has gotten to be home with mommy and me all day! So...that's what's been goin on recently. Catch everyone later.

Driving Miss Daisy



These were pictures that came about after my OT therapy this week. I was not in a happy mood as you can tell but I guess for mommy and the OT it made for some cute pictures. I had a good hold on that toy and they were joking that I was driving miss daisy. :-) Oh well...whatcha gonna do...I'm so glad I could bring them some enjoyment. :-)

Praying!

Do I need to say more. :-) I am just too cute.

Some of my pj's.

Grandma made my hat...it's nice and warm. :-)




Daddy is starting me off early with learning how to use the remotes for the t.v. Gotta watch me some good Florida and Cowboy football!

Monday, September 7, 2009

Just being cute


Me in my jumparoo


Such a little boy!




Mommy had to snap this picture because after she was done changing my diaper this is how I put myself. It was so funny.

Go Go Go Gators!!!!





Wednesday, August 12, 2009

Walker Take 2

This is me having fun and moving my walker. I'm getting better. Wait until towards the end when I actually try to stand a little bit in order to move my walker.

Tuesday, August 11, 2009

Pics

This picture cracked mommy up 'cause I was just laying there so content arms spread straight out to the side.


Somebody's ready for Football season!




My new seat

M&M's




Mommy wanted to make my birthday special so she had some m&m's made for my birthday. I think they are pretty cool. And yes...Nana and Papa we have a bag set aside just for you if you want them. :-)

2 Years Old!






Hey Everyone. I just celebrated my 2nd birthday on July 27th. Mommy and Daddy had a little party for me at grandma's house with some family. It was really fun and I got some pretty cool stuff like some wipes (I mean...I can always use wipes), a feeder seat that is pretty neat and a package of diapers and those head things that go in your carseat to help my head keep from rolling all around and a cool CARS hat. I also got a onesie from Aunt Roof that says "Chic Magnet" on it. Boy did she get that one right. :-) We had a good day all in all and would you believe that mommy and daddy got me a pinata to hit? Yes they did and we had lots of fun with it. It's hard to believe that I am 2 years old. Thank you Jesus for your miracles.

Tuesday, July 21, 2009

Me trying to sit up using my vision!

This is a cute little video of our vision therapy today and me trying to sit myself up. Gotta strengthen my back muscles. I think I shocked mommy and the therapist today!



Sunday, July 19, 2009

Big Boy Bed!



Mommy got this new little toddler bed for me. She found it at the flea market for $12 and brought it home and cleaned it all up for me. It gives the living room a little more room and I like my new big boy bed. It's very comfy. Thanks to mommy! Also being a little lower to the floor is very helpful since it's cooler down there and I get very hot sometimes! We will take the crib back over to grandma's since it will help her out when I spend the night over at her house. God is good!

Mommy being creative


These are pictures of mommy being creative. Since I would not really stay on my wedge the way I was supposed to with the straps and things and would roll or try to get out mommy stopped using it for a while but it really does help with my reflux and not being so "juicy" sometimes. So mommy got the wedge back out and tried to figure a way to help me stay on it since it helps me so much. That's when she decided to turn the boppy around and kind of have it hold me up. It works and it's great. Check out that look of comfort.