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.

Friday, June 6, 2008

June 6, 2008

Guess what everyone? I got myself rolled over today and actually got my arm out from under me this time so that I was flat on my tummy! Can you believe it? I have been trying for days and I just finally did it. Too bad mommy didn't have the video camera on but I don't like to show off too much for the video camera anyways. :-) This weather has sure been hot hasn't it? Mommy and daddy have the little window air conditioner on in the house but it still got to 86 degrees in here so mommy also had a fan blowing on me. It seems to help though so whatever works right? :-) Despite all the hotness my temperature has been pretty good. Mommy and daddy just gave me my bath so now I'm laying on the floor again with the fan blowing on me trying to keep cool. Mommy might have to get the cooling vest out tonight but we'll see. My sleep pattern got all messed up though the other day when I had my doctors appointment and everyone was keeping me awake. Last night I didn't go to sleep until 4:00am but I had a couple of long naps in the early evening. At least nurse Brenda was there last night but guess what...yep...mommy and daddy have me all weekend again by themselves so hopefully I won't be too bad for them. It's just that when I know they are up I like to party with mommy and daddy. Especially daddy since I don't see him all day like I see mommy. Although, I will have to say that I'm more of a stinker when I know daddy is staying up with me as opposed to mommy. I just like giving daddy a hard time. My suctioning has also been pretty good today too though for some reason. I haven't had to be suctioned a whole lot today. Well, I need to let mommy go so that she can hook my food back up 'cause I'm getting hungry and you don't want to mess with me when I'm hungry. :-) Later everyone.

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1 comment:

Anonymous said...

I'm slow but I knew there'd been an appointment and thought it was about time I found out how that went. Sounds pretty good overall. The heat has been a killer!!! Glad for a few cooler days this week. We got home at 1 a.m. on Monday night and I'm slowing digging out. Had meetings Tuesday and Wednesday night so yesterday was my first really free day. I dug out of the bathroom and bedroom which looked like closets! Elisabeth moved back in with her mom so things are beginning to settle down. Mark's nephew, Callahan, is arriving at Dulles Monday morning to stay with us for a week and attend Teen Week. Hope you have a good day. Gerri