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, January 25, 2012
Hey There Everyone. I know it's been a really really long time since I've had mommy sit down and write about what's going on like we used to. I am really hoping that I can get back into it so that those of you far away can also know what's been happening and what goes on. It was really fun when mommy and daddy and me could sit down and write about the day or week and all but it hasn't been the same. I guess it's time to get back into it though and I'll have fun with mommy writing about my day or week. So my vagus nerve stimulator has been turned on and is doing pretty well. It is still set pretty low right now but we have to work our way up slowly. This requires us going to the neurologist every 2 weeks to get it adjusted. There are different frequencies as well as different settings for how often it goes off. Right now it is set to go off every 90 minutes automatically and we just went on Monday and he changed the frequency again. I know it sounds complicated huh? It will just take a while to get to the point where it goes off every 3 minutes. Mommy also has a magnet though and if I'm having a seizure she can swipe the magnet over the chip in my chest and it right then sends a signal to my brain for 30 seconds and most of the time it brings me out of my seizure quicker and it's less intense. Hopefully when we get to the 3 minute mark we won't have to use the magnet as much. All in all that whole process is going fairly well. I am still having lots of seizures but that's ok because that also makes me who I am. The device is also set low at this point as I mentioned so it will take time. It doesn't help though either that I'm teething and that's no fun. I wish they would just come in already. After much fighting with me and all mommy was also able to get my AFO's (my little braces) back on my feet. Mommy has not been able to get them on me for a really long time because I think all the extra seizures and me not having occupational therapy or physical therapy I have gotten really stiff. So mommy has been doing what she can and It's getting a little better but she was determined to get them on me and that she did. I gave her mean faces while she was trying to put them on because I didn't like it but I know I will get used to them again and hopefully my feet will start to stretch back out again. Well, that's all for now. I will catch up some more later. I gotta let mommy go get a few household things done...well, maybe I will we'll have to see what kind of devilish mood I'm in. :-)