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.

Saturday, March 29, 2008

March 29, 2008

Well everybody, I have been such a little hot box today. I was doing really great this morning and actually slept for about 7 hours last night. I woke up and was playing on my mat and then all of a sudden I got really really hot like 104 degrees and so mommy and daddy had to give me a bath to cool me off and then I had myself so worked up I kept throwing up. But, I soon settled down after I had my medicines and some Tylenol. Thank goodness. I'm waiting for my cooling vest to come and so that should help out greatly when I start getting hot especially come this summer when the temperature is hot anyway. I got to go over to grandma's today too so that mommy and daddy could do their grocery shopping. I was still a little hot when I went to grandma's but she held me for a few minutes and took my socks off and rubbed my leg and I was soon fast asleep and slept for a few hours. Then mommy and daddy came home and got to watch everyone play Parcheezi and of course pop pop bob had to win but mommy came in 3rd and daddy came in 4th. And yes, grandma came in 2nd. We just got back home and once again I'm starting to get hot so hopefully I will cool off and not get so hot again. Mommy did though get me some baby orajel today and just put some on my gums and I calmed right down. Hopefully these darn things will come in very soon. I will let mommy go now so she can get ready for bed. See you all later.

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1 comment:

Anonymous said...

Hey David! Grandma just loves to hear about your daily escapades. You are such a cutie and I just love your little chubby legs. Love you, Grandma