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, July 12, 2008

July 12, 2008

Hi There everybody. Just wanted to let you know that I haven't dropped off the face of the earth!! :-) Mommy and daddy have been busy with me and trying to get sleep as well since we don't have a nurse for another 3 weeks. Daddy and mommy have done a great job though so far this week. I actually slept for them last night from about 8:00pm until about 1:00am! That's pretty good I think. Only 3 more weeks to go. Well, I have had a pretty long day today. When I woke up this morning I was really gassy and just fussy and hot. Well, that started a whole gamma of things. From the cooling vest to a bath to mommy holding me to being on the floor to getting Tylenol to playing my music box. It was fun around here this morning. We then had to take my Auntie Foo Foo and cousin Alysa back today and so already being fussy was not a fun trip. I slept most of the way home though so mommy and grandma got a little break. :-) After that trip today I came home and was finally glad to stretch out on my play area and yes...got a little hot again so out came the vest and then mommy and daddy took me in the hot tub. I had so much fun kicking my legs and laughing and playing in my little boat and it cooled me off which was nice. I'm trying to wind down now from a long day and maybe I'll sleep again for mommy and daddy tonight. I will talk to everyone later and even though mommy and me may not get to the blog every night we will try to write at least once a week for the next several weeks. It all depends on how good I am and how tired mommy and daddy are. Catch you all later. Goodnight.



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1 comment:

Anonymous said...

Had fun catching up on your blog. How are the nights going? I'll try to call in the next few days.
Love, Gerri

7/18/2008 9:06 PM

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