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, November 28, 2008

November 28, 2008

I hope everyone is doing well after Thanksgiving. I am thankful for my mommy and daddy and really for still being here when the doctors said I wouldn't. Thank you Jesus. It's hard to believe that I am 16 months old. I know mommy and daddy are truly thankful too that we are a family and we have our tough times but we also have our good times. You can actually pray for me as you think about it because I have been having a few more seizure activity lately which has been keeping daddy and mommy very very busy at times. I will have my blood check here probably next week in order for them to do a Phenobarbital level to see if that seizure medication needs to be increased a little bit because of me growing. Seizure medicines are dependent on weight and since i have gained a few pounds it might be time to increase that. That's one reason they don't want me growing too big too fast. Along with the more seizure activity it is making me have my little "pass out" seizures more often as well as causing my tummy to kind of contract and stuff which is making me throw up which is also keeping mommy and daddy busy. Hopefully we will get this all straightened out soon though. I go down to Johns Hopkins on December 4 in order to have my trache changed to the next size up. And then the following week I got down to Kennedy Kreiger in Baltimore so we a few busy days coming up next week. All in all though things are going well and I am still liking my new swing bed very very very much and it really does help calm me down a lot. Well I will run but I will talk to everyone later.

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1 comment:

Michele said...

Hi, big boy. How'd you do at your doctor's appointment today?