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, November 29, 2009
Hey There Everybody! I know it's been a long while since I have talked and updated everyone. So sorry about that but things around here just get so busy sometimes that I don't allow mommy so much time to update. :-) We have pretty much been just hanging out here at home especially since it's flu season and the swine flu and all going around. I can pick up something very quickly so we have been cozy here at home. This was actually the first Sunday in such a long time that mommy and daddy actually got to go to church. I am still being weaned off my phenobarb and still have until February so my sleep has still been very messed up. Mommy and daddy and I are really hoping and praying that when I get off the phenobarb that I will get into a good sleep pattern. Daddy has still been looking for work too and the bad part about it is the fact that mommy has to call Johns Hopkins in the morning because we no longer have insurance for me through daddy's work so Hopkins will probably not take my WV Medicaid but that's why mommy has to call them to see if they will and if they won't then I don't know what we are going to do because that is where the reconstructionist is who has been seeing me about the reconstruction on my nose to hopefully one day get rid of my trach. My ENT is also there so not sure what will happen with all that now. I guess we will find out when mommy calls though. That's pretty much what has been happening around here. Mommy and daddy and I are just hanging out and enjoying each other's company and spending family time and making memories. You can see we've been busy by all the pictures in the posts to follow. :-) We will keep you all updated as things go a long...hopefully it won't be so long in between.