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.
July 4, 2008
Good evening there folks. We did our fireworks last night since Uncle Frankie had to work today and the weekend. It was lots of fun. We had a picnic over at grandma's and ate way too much again. Today we just hung out at grandma's and played games and I slept some and we just had some good ole fashioned fun. Well, mommy and daddy are in for some fun the rest of this month. Long story short is now my medicaid for the month of July does not cover any kind of nursing. It's really stupid and no fault of our own either because people don't let you know what is exactly going on and what you need to do. So, because my medicaid is not covering the month of July and Daddy's insurance does not cover any nursing either we don't have any nursing coverage until August. Unless Daddy and mommy can come up with about $4,000 in order to pay the nurse to be here they have to do it all by themselves. Hopefully though I will be a good boy for them and sleep a little bit at nights so that mommy and daddy can get some sleep. I know though that they will work it all out and things will work out but if you think about it pray for mommy and daddy to have the strength to get through the next 4 weeks!! Well, I will let mommy go so she can get settled and get some rest the first part of the night as daddy will be up for the first part of the night in order to let mommy get some sleep and then she will get up and let daddy get some sleep. Goodnight everyone.
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