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.

Monday, August 18, 2008

August 18, 2008

Good evening there everyone. You could pray for me that I start feeling better and that I start sleeping some at night for mommy. I haven't slept very much again the past 2 days so I know mommy and daddy are tired. I actually slept though from about 2:00pm this afternoon until about 5:30pm so mommy go a little nap in until about 4:00pm so that she could feed me. I'm just one little firecracker sometimes. :-) I have a funny story to tell you though. Tonight when mommy and daddy were giving me my bath I was a bad boy. I always like to pass my gas in the tub 'cause I like to make bubbles but I got this excited look and mood on my face which I tend to do before I make a bowel movement and mommy said to daddy, "I think he's getting ready to poop." Well, I calmed down and so mommy though she was in the clear until I made my "poopy" face and yep...out came some little turds floating to the top! :-) It was really quite funny and I'm always trying something new. :-) Well, I just had to share my funny story about pooping in my tub. Have a great and wonderful evening everyone.



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3 comments:

Michele said...

Oh no! Pooping in the tub, huh? Is that the Chiappetta side or the Brown side of the family?

Aunt Michele is praying for you all and she also has a list of people to email and see if we can figure out how to get Medicaid back.

Love you! XOXOXOXOXO

Anonymous said...

So sorry to hear about the nursing situation. We just got back from being gone for two weeks and it's been crazy here but the next couple of weeks looks like they should be relatively calm. Maybe I can spend another night so you can get some sleep. The blog is helpful to keep us up to date and how to pray. Love, Gerri

Auntie Foo Foo said...

Hey there Baby Boy!

I am praying for you, mommy and daddy daily!!!! Go figure on the system. Those who do not need nor deserve it, get it. Those who need it, cannot!!!! What is wrong with this picture!

Stop pooping in that tub young man :-)

Love you Sugar
Give mommy and daddy big hugs and kisses.