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.

Tuesday, September 23, 2008

September 23

Hey Hey Hey everybody. Sorry it has been so long but things have been a little crazy around here because mommy and daddy still have no nurse yet! It is just one big mess! One person says one thing and another person says another thing. Well, mommy had a few minutes so she figured she'd grab me and catch you all up on what's been going on. I have been doing pretty well. I've been enjoying my walker and am getting pretty good at moving it backwards all by myself. I also got mommy good again the other day when after she gave me my bath she had to give me a suppository and I pooped and she changed my diaper and by the time she got the other one on me I was pooping again. Good thing she got that diaper on me. That'll teach her to wait next time until I'm really done. :-) I go back to Hopkins to see my ENT in December so that they can change my trache to a little bit longer one. Also, mommy and daddy and grandma have discovered maybe a way to help me sleep better. Grandma had this little red nightlight hung on the wall in the spare bedroom at her house and that's where she puts me when she watches me and I just did so well with the light in there and even when I would stir and wake up I would put myself right back to sleep or lay there calmly. So, guess what...Sunday night mommy fixed up my bedroom and put me on the twin bed and put lots of pillows on the side so I wouldn't roll off and daddy has a red lava lamp so she put that in there and guess what...I really like it a lot. So mommy hooked up the baby monitors and I was good to go. Sunday night mommy actually got to sleep in her own bed next to daddy until about 3:45am. Now, last night wasn't as long but that's just 'cause I was really fussy and unsettled and needed mommy to hold me but we got it all worked out too and mommy got a little bit of rest last night too. Although, mommy has to take care of daddy today too because he stayed home from work today not feeling so good. He has a really bad cold and just doesn't feel good. Poor daddy. :-( Well, I'll let mommy go get something to eat so talk to you all later.

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