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, February 26, 2010
I guess we all have to have those funny bathroom stories and boy did I sure give one to mommy and aunt Ruth the other evening. I was over at grandma's for the evening since she was watching me that particular evening and so mommy was getting my bath water ready and I had made a little poopy in my diaper right before Aunt Ruth brought me back to the bath. Grandma warned her that she should put a diaper back on me until mommy was absolutely ready. Well, let's just say Aunt Ruth "thought" she would be ok. She was holding me with my head in one hand and feet in the other...all of a sudden mommy looked over and saw a stream shooting out...mommy said look out and so then Aunt Ruth pointed me in a different direction and finally that stopped but it got all over the floor and mommy's foot. :-) And it gets better...after that was over mommy looked over again and next thing that happened was plop plop plop plop on the towel. All this was over the nice clean towel mommy had laid down to put me on after I got out of the tub. To make matters worse they were laughing so hard 'cause I guess it was funny to them that Aunt Ruth finally handed me over to mommy and mommy was about ready to put me in the tub when Aunt Ruth leaned back against the wall and accidently turned out the light. After that...they both yelled for grandma and to top it off...she came in and snapped a picture. Oh it was such a joyous evening and we all had some laughter out of it. I will always keep things interesting.
Tuesday, February 23, 2010
Saturday, February 13, 2010
Wednesday, February 10, 2010
Hi Everyone. Well, mommy and I are still hanging in there. Things are still so different but we are managing. I am totally 100% off my phenobarb!!! I finished it up last week. So I have been totally off of it for a week now and have been doing fairly well with it. I have been more alert and much more interactive as well as really making more sounds and all through my trache. The past 2 nights too I have slept pretty well. Better then I have in my entire 2 1/2 year life. :-) Maybe once this phenobarb really gets out of my system then hopefully I'll get a decent sleep pattern going. I know mommy would be happy about that. Other then that things are ok. Still adjusting. We have had lots and lots and lots of snow the past few days and it has been unbelievable to say the least. We got about 33 inches plus the first round and probably around 10 or so today! As you can see from the pictures below it is quite a lot of snow. Mommy had to shovel a path for pumpkin so she can use the bathroom. Aunt roof came over to help the other day shovel a path for pumpkin all the to the back of the house. Maybe when it's not so cold and windy mommy will take me out in the snow! I'll talk to everyone later.