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.

Thursday, June 26, 2008

June 26, 2008

Hey There Strangers. I know, I'm the stranger huh? Sorry we haven't written in a long while but mommy has been sick the past few days and is now feeling much better. She had to call daddy home from work on Monday and as soon as daddy got home mommy went right to bed the rest of the day! She still was not feeling well on Tuesday so daddy had to stay home again in order to take care of me so that mommy could stay in bed again. On Wednesday daddy really had to go back to work and so with mommy still not feeling well we had to set up camp with me right on the floor next to the couch so mommy could lay down and yet still had to take care of me. Poor mommy. She is feeling much better today though and I tell ya what...I have really missed her because I really didn't get to see her very much the past few days and was just out of sorts. But today was a different story. Buddy, I had my mommy back and I was just the happiest playful little boy today because I could sense that mommy was feeling better and was holding me and talking to me and that made me very very happy. I hope I don't get what she had though. She threw up once and felt really bad on her stomach and had chills and sweats and then the next few days she had diarrhea and couldn't stay out of the bathroom. Today like I said has been a very good day and I had lots of fun with mommy today. We played together and laughed and smiled and she even got to clean her house. I got to see grandma this morning too for a few hours and that was also great. Wait...it gets better...this evening grandma came over and got in the hot tub with me and mommy and boy did we have a blast. I was just laughing and smiling and kicking my legs and it was lots and lots of fun. So, grandma, we'll have to do this again real soon. :-) Well, I let mommy go so she can relax a little bit before the nurse comes tonight so I will talk to everyone later. Have fun everyone.

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Anonymous said...

Hey Davie Doo! Grandma really enjoyed the hot tub too! It made her bad leg and knees feel a lot better. I also had fun just seeing you have fun! Maybe Nana and Grandpa can get in the hot tub when they come in a couple of weeks! Take care of mommy! Love you, Grandma

Michele said...

Hey, I missed you, bug! I'm so glad mommy is feeling better now. Love you all!
Auntie Michele