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.

Wednesday, July 2, 2008

July 2, 2008

Today was kind of a busy day today for me. Mommy had me in my bumbo seat this morning for a little bit and I liked sitting up and even burped a few times. My bumbo seat helps me learn how to sit and hold my head up. Alysa and Auntie Foo Foo came over this morning again and Alysa and I had fun together. She played with me a little bit in my bumbo seat and she suctioned me out quite a few times today too and is getting really good at it. I also threw up just a little bit clearing all the phlegm from my throat and so mommy had to give me a bath and Alysa helped mommy do that. Then Alysa picked out my cute outfit that I am wearing in these pictures and I look so darn cute if I must say so myself. It was then medicine time and Alysa learned today how to give me my medicines and she did good. We had to go to Walmart too and so Alysa pushed me all through Walmart. We then spent some time over at grandmas this evening and so now I am very tired and hopefully will sleep good tonight. At grandma's I had about a teaspoonful of baby cereal and that was yummy. I'm ready to call it a night so I'll let mommy go and talk to you all later. Nite Nite.

Posted by Picasa

No comments: