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.

Tuesday, March 24, 2009

March 24, 2009

Hey Everybody...sorry mommy hasn't been on here and updating in a while but sometimes just get so busy around here and mommy is tired. I have been fighting an ear infection and so I haven't been sleeping too well. Mostly not at all at nights. On top of everything else I am starting to get a little tooth and again...that doesn't make it very fun around here. :-) And when I don't feel good it causes me to have more seizures and things like that as well which sometimes interrupts my sleep! We are all doing good though and hanging in there and God's strength is getting us through. That and mommy has been drinking A LOT of coffee. :-) I have been doing really well though on my baby food that mommy has been giving me. I get to have pears and carrots and green beans and oatmeal and one can of formula now and I am definitely growing. Maybe even growing too big too fast so when we go back to see Dr. Levey at Kennedy Krieger we might have to do some adjustments. :-) I haven't had alot of gas with the baby food either and I am much more content! We have an appointment with my pediatrician tomorrow Wednesday the 25th to see if my ear infection has cleared up. Then on April 14th we go to Johns Hopkins to see again about reconstruction on my nose to open it up and maybe the possibility of not having my trache. We'll see what happens. It is certainly something to be in prayer about because this is big! Well...I think that just about brings you up to date so I will let mommy get off here and we'll keep taking pictures and posting some. :-) Love you all.

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1 comment:

Michele said...

I'm so glad to read all this good news...I'll be praying about his April 14th doctor's visit. And I'm also glad to see the baby food's been working. God bless you, Deb! You are a smart woman to have figured that one out.