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, August 1, 2008

August 1, 2008

Hey Hey Hey Everyone. Hopefully things will get back into a routine soon but still no nurse for the weekend either. Please pray that the nursing agency will do what they can about getting authorization and get nurse Brenda back in here on Monday. This is just getting absolutely ridiculous now!! This has been a busy week since I turned 1 year old on Sunday and then Nana and Papa stayed until Wednesday and then Pop Pop's family came in today and I get to see my cousins Maria and Jake and Ben and Danny. They will be here the weekend so it will be fun hanging out with them. Mommy and Daddy changed my feeding schedule to to make me feel more like a normal baby and I have more freedom now too. They are feeding me one certain amount every 4 hours and it's been working well so far. Now I don't have to be hooked up to my pump and they are still giving me my formula through my tube but are using a big syringe and giving me more of a bolus type feed. Mommy gives me a little and then burps me and then gives me a little more and then burps me again and then gives me the rest and then burps me again if I need it. I have been doing ok with it so far. I am enjoying my freedom. I am getting about 3.2 oz of formula every 4 hours. That may not seem like a lot but for me and my smaller stomach that is very good for me. Well, now mommy has to stay up until at least Midnight with me so she can feed me again at midnight. Goodnight everyone.

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