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.
Wednesday, February 11, 2009
I also got my new bath chair yesterday too. It is bit but again I will grow into it. It was very comfortable though. Mommy has it on the lowest setting. It also tilts up so that I would be sitting up like in a chair but for now this works the best. Mommy and daddy I'm afraid are going to have to take off their shower doors because it's getting a little harder for mommy to bathe me especially with my chair being so big. And who knows where mommy and daddy are going to store it because their bathroom is very very small and they need to take a bath and shower too. Oh well...I guess we'll figure out something. I just thought you all might enjoy seeing the pictures of my new bath chair and stander.
I just got my new stander yesterday to help me learn how to stand up better and put some good weight through my legs and feet. Am I starting to look more like a big boy now? As you can see in the pictures I certainly have a lot of room to grow into this contraption. :-) Yesterday my therapist spent time setting it all up and mommy and her had me in and out of it getting the adjustments right for my height. And finally...success. They put me in it and left me there for about 10 minutes and I did good. We have to start out by me just being in it for like 10 minutes at a time working up to about a half hour. Because I'm now standing and in an upright postition it makes my heart work harder so we don't want to overdue it. It's also good for strengthening my heart muscles and all. You probably can't tell from the picture but it is tilted back a bit. It will raise straight up but again I have to work towards that because we don't want to overwork my heart. I think this is a neat little contraption. :-)
Wednesday, February 4, 2009
Hi Everybody. Guess what...mommy had to throw away my green and blue striped dinosaur suit. It was a very very favorite outfit! I would have to say one of my favorites and it's gone now. :-( See...here's what happened. I have been having lots and lots of gas still and so I was doing my passing gas thing and mommy changed my wet diaper. After I got a nice clean diaper I pooped some. Then after mommy changed that diaper I was doing some more passing gas and mommy had to pick me up for that one to help me get it out and boy was it explosive! I passed my gas and then I pooped some more...only this time it was bad. Mommy knew I had pooped so she layed me back down to change my diaper and what to her wondering eyes appeared but a whole cute suit filled with poop! :-) Yes...I had pooped all up the back of me and it was all squishing out my diaper up the back and my suit was nasty. It was really too much to be able to clean and wash so mommy had to throw it out. I guess mommy is just going to have to find me another one but she doesn't remember where this one came from. She's thinking it's Walmart but does anyone who have little ones know where this one might have come from? Is it Walmart? Please...I really really need a new one. I'm very sad I had to part with it! It was such a fun day for mommy yesterday because after I had done all that of course she had to do my laundry and change the comforter and stuff on the couch from previous spit ups and she went to change my suit after that and started putting one on me and I guess it somehow got folded back up and put in the drawer dirty because it has slobbers and stuff all down the front of it and smelled pretty bad so she had to take that one off and put on another outfit. I was keeping mommy busy yesterday but we had fun. :-) Catch everyone later.