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 9, 2008

Sept. 8, 2008

Hi There everyone. Mommy is up with me tonight so we figured we would write. I think I have caught up on my sleep and now I'm in my pattern of not sleeping much again. Go figure. I only slept a few hours today. I was up at 1:30AM yesterday morning and took about an hour nap around 8:30am this morning and had a short 3 hour nap from about 7:00pm to 10:00pm tonight and since then I've been going strong so mommy is trying to stay awake and so I suggested we get on the blog and write something. Grandma took me and mommy a ride in the golf cart this evening and boy was that ever fun. I really really like riding in grandma's golf cart and it really does calm me down and I just have so much fun laughing and smiling. Believe it or not after our golf cart ride is when we came back inside and it didn't take me very long before I was asleep. Maybe we'll have to start taking golf cart rides at like 2:00 and 3:00 in the morning and maybe that will help put me to sleep. :-) Well, I'm getting a little restless now so mommy needs to put me back down on the floor on my little bed so I will let her do that and I will talk to you all at some other point in time. Just to let everyone know I have an appointment at Johns Hopkins coming up on Sept. 18th with my ENT doctor to check my trache again and make sure it's still the right size that I need and everything. Not a major appointment but nonetheless it means driving to Baltimore. We will let everyone know too when the next appointment is with the reconstructionist for my nose. Mommy still has to call them this month in order to set up an appointment for next April. I'm sure that will be here before we know it. (mom, please put me down so I can play and you can suck me out)! Sorry everyone but I really do gotta go. Catch you all later.

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Anonymous said...

Grandma will have to set the alarm and get a big flashlight (the golf cart doesn't have lights)! Hey, we can try anything we want to if you will sleep better for mommy and daddy. Love you, grandma

Michele said...

Hey, Davey, I love you! Love to Mommy and Daddy too.