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.

Tuesday, March 25, 2008

March 25, 2008

Today has been a pretty good day. My temperature has been really good today. My occupational therapist came to see me today and I think I just knocked her socks off! :-) She was impressed at how well I was kicking at my chime toys and how good I was holding my head up. I even put some weight on my legs for her and stood up on my legs for a little bit of time. For some reason though I have been a little more fussy today. Momma isn't quite sure what is wrong and I can't tell her so I guess she'll have to keep guessing. It has been windy this afternoon too so I think that has a little bit to do with my being fussy. Momma thinks I might be cutting teeth but I won't open my mouth so she can check either. :-) hee hee hee hee. I think I just need to tell her too that I am tired of laying on my back because every time she puts me on my right side I settle down and I like my tummy too. That's ok...mom will figure it out sooner or later. Mommy also got an appointment scheduled for me to see the plastic and facial reconstructionist doctor. That appointment will be back down at Johns Hopkins on April 1 at 8:45am. I hope I get some good news. Well, I just had my bath so I'm trying to settle down now on daddy's chest. It should be fun around here on Wednesday and Thursday because mommy and daddy have me all night long because the nurse will not be here Wed. or Thurs. I hope I can get some good sleep then especially for mommy and daddy's sake as daddy will have to work the next day and mommy might not get much sleep then if i don't sleep. I always keep them on their toes.



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