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.

Sunday, April 6, 2008

April 6, 2008

What's up everyone? Boy, has mommy been busy this weekend! She worked one day cleaning out all my drawers (my clothes drawers...not my diaper drawers) and bagged up all the clothes that are too small for me. Can you believe it that some of my clothes are actually getting too small for me? Some of them are too tight and too short. I'm a growing boy. So, if anyone wants to they can get me some more onsies (size 6-9months) and little shirts for upcoming summer time. Mommy had to get rid of most of those and I don't mind even if they are used. Also this weekend Aunt Roof came over and helped mommy clean out and rearrange my room. I haven't slept in my crib for a couple of months because I didn't like the enclosed feeling...it reminded me too much of the hospital and I don't like that. So, mommy put the crib over at grandmas house for bob's grand kids and then rearranged my room with the single bed that was in there. I get to sleep on a big big big boy bed now and I tried it out today and like it very much. It is very comfy. We set it all up nice for the nurse now too so she can sit in there and have her own little space. I think she will like it. Check out the new pictures below of me in my new bed. I have had an exhausting weekend watching mommy run around so I hope I sleep tonight. I will see you all tomorrow. Take care.

Posted by Picasa

No comments: