Well, hi everyone. Things here are going ok. I have certainly been keeping mommy and daddy busy still. You can pray for me because I have been really really really gassy lately which is keeping mommy and daddy on their toes. Other than that thing like I said are ok here and we've been having fun as a family. Just to keep you all updated...I have an appointment in April to see the reconstructionist at Johns Hopkins to see what the next step is with getting my nose operated on and opening up my nasal passages. Really I don't have any appointments anywhere until April which helps out so we don't have to worry about the winter weather travel. I will talk to all later.
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.
Saturday, January 24, 2009
This is kind of a funny story you see. Mommy was giving me a nice little boy haircut and it was so very cute and boyish but seeing as how it's hard to hold my head up anyways I moved and this is how mommy tried to correct it... (see first two pics). It wasn't totally bad looking but as you can see mommy had to go ahead and shave my whole head so that it would be more even and grow in better... (see last 2 pics). I think I look more like my daddy with my head shaved and almost balled. :-) Now...daddy would tell you a different story and say that mommy just messed up my haircut and I didn't move at all. So...what's the whole truth? Well, we'll just keep that between all of us and let mommy and daddy duke it out. :-)
Saturday, January 10, 2009
Hi There Everyone. I hope this new year finds you all well. I am doing pretty good myself. I have been keeping daddy and mommy busy still but I don't think that will change. :-) I just had my bath and daddy just went to Dunkin Donuts to get mommy a nice good coffee so mommy and I thought we would take some time to update the blog. We have increased my seizure medicines because I was having more seizures but that seems to be more under control now since the increase in medicines. I have had a lot and I mean a lot of gas again which is not much fun for any of us. I also have a little bit of a slight cold I think and that's not much fun either. Other than all of that though as I said things are pretty well and busy here like normal. Last weekend we had all my Aunts and Uncles and cousins around so that was fun celebrating the new year with them. Well, I will let mommy go now since daddy is back with the coffee and I will let mommy enjoy it. Well, at least I will try and let mommy enjoy it. :-) Talk to everyone later.
Boy am I happy that the Florida Gators won another National Championship!!! Not only am I excited though but daddy and mommy are pretty happy too. After the game was over we all were running around the house doing the gator chomp. It was so much fun. :-)
Hi Everybody. Every year our church has a men's and boys New Years breakfast and of course daddy had to take me. :-) You can tell that he just wore me out so much that all I wanted to do was go to sleep after I got home. It was nice though. I liked hanging out with daddy and letting him "show me off." I think I look like a little man in this outfit what do you think?