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, July 23, 2008

July 23, 2008

I know it has been such a long time since I have written so hello everyone. Mommy and daddy have been doing a good job all this month with having me by themselves at night with no nurse. Things have been pretty busy around here though. Guess what...I am having my 1st birthday party on Saturday!!!! Can you believe that I will be 1 year old on July 27 which is Sunday? I'm a big bad dude. Nana and Papa and Aunt Michele are flying in on Thursday and will be here for a few days. That's why we are having my party on Saturday over at grandma's house. It will be so much fun and I hope I get to eat lots of cake! :-) Today, we had some people from the WV Deaf and Blind School come to see about my vision. I actually did ok. I tend to see more off to my left than anywhere else and they left mommy and daddy with some cool little toys to help me learn to hopefully see better and to work with me to try and get me to see off to my right as well. Mommy and daddy have more stuff to do now. :-) It's cool though...mommy is very excited to be able to work with me and have some fun with me now knowing what I can see and where and all that. I know mommy and daddy will do a very good job and they have also offered to come out every so often to work with me some more and give mommy and daddy some more insight as to what they can do and how I have improved. Pretty cool stuff. My occupational therapist also ordered me this week a feeder type seat to where I can sit up in a full upright position with support as well as being able to rest my head. It also reclines too though. I can't wait until it gets here to try it out. I think I will like it a whole lot. Well, I will let mommy go now so she can get a few things in order before Mrs. Johnson gets here. She has offered to watch me tonight so mommy and daddy can sleep good tonight. Grandma actually had me last night too by herself so mommy could get a little rest. Only about a week or so left before mommy and daddy have the nurse back. Catch everyone later.
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