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.

Friday, May 30, 2008

May 30, 2008

Guess who everybody? Yeah, it's me. Sorry that it's been a while but mommy and daddy have been very busy and very very tired lately. See, my nurse was supposed to be back Wednesday night but she called on Wednesday and has some family needs that she really needs to take care of and doesn't know when she will be back to work. She is in a very tough situation so if you think about it you can pray for nurse Brenda and just pray that she will know what to do and that things will work out and that she would be able to get some sleep and hopefully soon will be able to return to work. So, having said that...Brenda was the only nurse and they have not found anyone else yet so that puts a little strain on mommy and daddy. Mommy tries to stay up most of the time and lets daddy sleep because he has to go to work and he can't go to work without having any sleep. Right now we have been altering our schedules a little bit and for the past few days grandma has had me in the evenings so mommy and daddy can go to bed about 6:30pm or 7:00pm and then go back over to grandma's to get me and bring me back and then daddy goes back to bed at about 11:00pm and mommy let's him sleep until about 3:00am and then he gets up so mommy can sleep from 3:00am to 5:00am and then daddy leaves for work at around 6:00am. Sometimes mommy can catch a nap during the day if I'm sleeping but I don't always sleep. Hopefully in another year or so we won't have to be doing all this once they are able to correct my nose and get rid of my trache. That's just the bad part right now is that someone has to be with me and up if I"m up because of needing to be suctioned out. So, it has been interesting around here. We are hanging in there though and mommy and daddy are doing the best that they can. I haven't really been bad for mommy and daddy though. I just am awake most of the night. Mommy never knew she could watch a marathon of Home Improvement for about 4 hours or so. Not much on anyways that early in the morning and watching TV certainly makes anyone sleepy anyways so sometimes mommy has to fix herself some coffee and some bacon or get something to eat in order to help her stay awake. ya gotta do what ya gotta do sometimes I guess. So, if mommy doesn't write everyday you'll know why because she is very tired. I have had fun hanging out with grandma though. We get some grandma/David time and that's pretty fun and special right there. Well, I'll let mommy go so she can get some things straightened up and try and get me settled. Talk to everyone later.



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2 comments:

Michele said...

FYI, Aunt Michele has several friends praying for you. And since they know how to pray, I know God will hear and make a way for all of you! I love you, and I'm praying for you too. God is your strength, and your joy. :-) XOXOXO

Auntie Faye said...

Hi There Big Boy!!! Wish I was hanging with you Buddy. It is hard to believe you will soon be a year old. Give your mommy and daddy a big hug for me!