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.

Monday, June 2, 2008

June 2, 2008

MY NURSE BRENDA IS BACK WITH US TONIGHT!!!!! Hip Hip Hooray Hip Hip Hooray. I know that mommy and daddy are very thankful that nurse Brenda is back tonight. That means that now mommy and daddy can get some sleep. Although, it might take them a little while to get used to going to bed at night and staying in bed asleep since they have had a crazy schedule lately. And then again...it might not take much because I know they are both exhausted. I do love mommy and daddy though and they do a good job at taking care of me. I have been a good boy and haven't really been fussy or really have any temperature spikes or anything so that has been good. I just had my bath a little bit ago and am happy and content playing on the floor and just relaxing. I think I know how to get my way now when I want to be held. :-) All I have to do is just wrinkle up my face and make my crying face and fuss a little bit until I get picked up. I tried it over the weekend and mommy and grandma thought it was my gums bothering me because of my teeth because I do kind of the same thing so they put some orajel on my gums but I didn't settle too much until they changed my diaper and then I settled down completely. Hee hee hee hee. And today I started doing the same thing and I think mommy got smart this time so she checked my diaper and that wasn't wet so that wasn't the problem. She picked me up and started to rock me in my favorite position and guess what...you guessed it...I stopped my fussing. Mommy thought she was good though so she decided to try and put me in my swing since I was asleep and nope I didn't want my swing because as soon as she moved and started putting me in my swing I began fussing again and throwing my legs and not cooperating and so mommy held me then in the chair and as soon as mommy sat down guess what...yep...stopped again and went to sleep. :-) It's been such an entertaining day. Well, mommy has to clean up my room a little bit since Brenda will be back tonight so I will let her go and talk to you all again. I hope tomorrow (June 3) is good weather as we have to travel down to Kennedy Kreiger in Baltimore tomorrow.
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