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, October 9, 2008
Monday, October 6, 2008
Hey All. We had a busy weekend but it was fun. All of my aunts and uncles and cousins all came in and so on Friday grandma and pop pop and mommy and I all met Aunt Bonnie and Uncle Ryan at Reynolds farm where they have a big hill slide as you can see in the background and a bunch of different things kids could play on. We met them there so that my cousins could get all their energy out before getting to grandma's house. It was so fun as you can see mommy took me down the slide a few times and I really liked it and then I sat on this big comfy hay bail that looked like a big couch. Pretty cool huh? I had fun this weekend with everyone and I can't wait until around Christmas to see everyone again. My first experience on a big slide and it was pretty neat. Now it's back to the grind and yes I'm still giving mommy and daddy a hard time. I'm only sleeping about 3 hours a night now and I just got over a bad nasty cold that mommy and daddy gave me so that has kept them pretty busy. No nursing as of yet either so mommy has been tired but she's a good sport and has been doing good. Daddy gives mommy a break whenever he can and I've been sleeping a good amount of time in the mornings from like 6:00am to 10:00 or 11:00am so mommy tries to catch a nap then sometimes. The nursing situation is just really really frustrating because I don't think someone is telling something somewhere because Unicare keeps denying me and nursing at night saying that it's not medically necessary that I have one because for some reason they think I'm stable. How can not sleeping very much at night and having seizures and needing suctioned out and being at risk for aspiration because of throwing up constitute me being stable. I just don't get it and I know mommy and daddy don't get it either. It seems like no one wants to help get this thing straightened out either. Guess we'll have to go higher and get a lawyer or something or else leave the situation alone but mommy and daddy really need some sleep so that they can take care of me. Oh well. I'm sure something will work out somewhere. Well, I'll let mommy go because it's almost medicine time so I'll talk to you all later.