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.

Monday, March 24, 2008

March 24, 2008

Well, I had my doctors appointment today and it was a very long day. I did pretty well in the car though and slept most of the time and was awake a few times too. My mommy had to climb in the back a couple of times to suction me out while grandma was driving. The ENT appointment went well. He said that my trache looks great and I don't need another size yet. I have to go back and see him in about 6 months so mom has to call in about 3 months to set up that appointment. I also have been referred to another doctor who does reconstruction and stuff so they can see about maybe reconstructing my nose and things in order to open up my nose to let me breathe through it. The ENT today seemed to think that I am in for a few surgeries throughout the next few years and it's going to be a long process. Mommy has to call tomorrow to set up an appointment for that and to see when they could start doing something. I'm not done growing yet so it could be another year or so before they could even start. We'll just have to take each day as it comes. My temperature has been good today and I haven't gotten too hot today. I'm now settling down on daddy's chest and having some cuddle time with my daddy so I will go now and talk to everyone later.

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1 comment:

Anonymous said...

Thanks for the update. I thought about you all all day as I painted the bedroom. Seems like the report was good but the processes for the next steps slow. Nothing is ever as quick as we would like. I hope waiting another year was an exaggeration! You've already waited nearly a year. But, I guess, if that's the way it is...that's the way it is. I hope you can have a relaxing evening. Gerri (sorry about the anonymous thing...evidently I already have a goggle account and because I can't remember the password they won't let me open another one with my email address. I gave up.)