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, June 3, 2008

June 3, 2008

Hey There Everyone. We had a good trip down to Baltimore and back today. The traffic wasn't too bad and we made good time. Things went pretty well and they think I'm doing good. So much so that they really aren't changing anything and for mommy and daddy to just keep doing what they are doing with me. I got Dr. Levey though to write me something to give to my occupational therapist tomorrow who will then in turn give it to whoever she needs to give it to for someone from the state to come in and check my vision and see what I can see or if I'm focusing on anything and so forth. Once they do that and we know what I can see and things they have special toys and exercises and things in order to help me with all of that. Mommy asked Dr. Levey about my sleep issues and not really sleeping a whole lot and he said it is normal for kids with Holoprosencephaly (HPE) to have sleep issues. He said sometimes they use melatonin if there is more sleep happening during the day instead of at night which would help switch the pattern to sleeping at night but they don't really use anything for kids as little and small as me so right now it's just something we have to deal with and maybe as I get older I might develop a good pattern of sleep. It was great to see Elaine and Michele and even her mom today. Michele's mom is learning about traches and
G-tubes and she just happened to be there today and was talking to Michele and so we invited her in and got to tell her all about traches and G-tubes and all that wonderful stuff. Maybe now she won't be as scared. I hope we at least helped you out a little bit Michele's mom who's last name in Campbell like the soup. :-) All in all we had a good day and I go back to see Dr. Levey in December so we have a little bit of time before we see him again. Dr. Levey is very good at what he does and everyone is so wonderful down there at Kennedy Krieger. We appreciate each and everyone who is involved with David's care there. We want to thank you all very much. Well, I better let momma go and relax a bit since it was a long driving day. I think I'm going to go back to my play mat and just chill out and maybe catch a nap since I really haven't had one today. Goodnight everyone.


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1 comment:

Anonymous said...

Hey David! Grandma loves you.....you were a very good boy at the Doctors office.

6/06/2008 12:07 PM

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