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.

Sunday, March 23, 2008

March 21-23, 2008

I had a pretty good weekend this weekend and met some new wonderful friends and they all loved me. Maria even helped my mommy give me my medicines. She did such a good job too. Jake and Ben gave me lots of kisses. I didn't sleep for mommy or daddy again on Friday evening so mom only had about 2 hours of sleep on Friday night. I just couldn't get comfortable and was just fussy and agitated. I was feeling a little bit constipated. I was awake pretty much all day on Saturday too but slept here and there for short periods of time. After being over at grandma's house with all my new friends I was asleep and so daddy let mommy go to bed Saturday night and boy was daddy in for it. I let him sleep for about 3 and 1/2 hours and then I decided I was just going to get hot and give daddy a hard time. It worked too because he was trying to get me to calm down and get me to cool off ever since 1:00am and when mommy woke up at 5:00am to give me my medicines she had to help daddy give me a bath and then I slowly started to cool off and settle down. I think that was because mommy gave me some Tylenol with my medicines to help bring my temperature down as well. I did cool off though and was ready to go to church then. I had a good day in church but slept through pretty much all of it. Pastor Mark has that effect on me sometimes. :-) Just kidding...Pastor Mark is a very good preacher. Gina Mackenzie held me in church again this morning. I think she likes me or something. After church I came home and we went over to grandma's again to have lunch and say goodbye to my friends until they can make it back down here. I got cold today though so most of the day I have been on the cooler side and so mommy and daddy have had me in warm clothes and when we got home they had me wrapped up in some nice warm fleece pajamas and fleece blankets. I finally woke up about 6:00pm and am hanging out for now. Mom and Dad will have to keep checking my temperature now though since I am awake and they don't want me to get too hot. Who knows...I might get to put on another outfit yet before bedtime depending on my temperature. I will get going now but remember I have a ENT (Ear Nose and Throat) appointment at Johns Hopkins tomorrow (March 24) at 1:50pm so they can tell me what they can do about my nose and maybe open it up and if so perhaps when they can do such a thing. He will also look to see how my trache is doing and all too. I will let you know what happens at the appointment.
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