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.
Trying to sit up
Look at me! I am actually sitting up by myself for a few seconds with the help of my boppy. I have been starting this new thing where I like to try and pull myself up. I pulled myself into this position all on my own from being layed back on the boppy pillow. Mommy caught me like this when she came out from starting laundry. Can't leave me alone too long. :-) I still have a long long way to go but it's a start and I just keep on trying to sit myself up. Mommy had me just on the pillow the other day and I was still trying to sit myself up. I can at least get my shoulders off the pillow when I'm laying down like that. Also the funny thing was too I thought mommy was going to have a cow for a second because I was on my side and all of a sudden from the side position I picked up my whole head and held it there for a bit. She told me that's how I learn to roll over by getting my head up like that but we will see what happens. How do you like that miss former OT? :-)
Look at me! I am actually sitting up by myself for a few seconds with the help of my boppy. I have been starting this new thing where I like to try and pull myself up. I pulled myself into this position all on my own from being layed back on the boppy pillow. Mommy caught me like this when she came out from starting laundry. Can't leave me alone too long. :-) I still have a long long way to go but it's a start and I just keep on trying to sit myself up. Mommy had me just on the pillow the other day and I was still trying to sit myself up. I can at least get my shoulders off the pillow when I'm laying down like that. Also the funny thing was too I thought mommy was going to have a cow for a second because I was on my side and all of a sudden from the side position I picked up my whole head and held it there for a bit. She told me that's how I learn to roll over by getting my head up like that but we will see what happens. How do you like that miss former OT? :-)
2 comments:
WOW - you little dickens..........we will just have to keep praying - you are just so amazing! grandma loves you
Woo-hoo David!!!! <3. Miss you!!!
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