This is a cute little video of our vision therapy today and me trying to sit myself up. Gotta strengthen my back muscles. I think I shocked mommy and the therapist today!
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, July 19, 2009
Mommy got this new little toddler bed for me. She found it at the flea market for $12 and brought it home and cleaned it all up for me. It gives the living room a little more room and I like my new big boy bed. It's very comfy. Thanks to mommy! Also being a little lower to the floor is very helpful since it's cooler down there and I get very hot sometimes! We will take the crib back over to grandma's since it will help her out when I spend the night over at her house. God is good!
These are pictures of mommy being creative. Since I would not really stay on my wedge the way I was supposed to with the straps and things and would roll or try to get out mommy stopped using it for a while but it really does help with my reflux and not being so "juicy" sometimes. So mommy got the wedge back out and tried to figure a way to help me stay on it since it helps me so much. That's when she decided to turn the boppy around and kind of have it hold me up. It works and it's great. Check out that look of comfort.
Monday, July 13, 2009
Friday, July 10, 2009
Thursday, July 9, 2009
This afternoon mommy and grandma decided to give me a little boy haircut...what do you think? I think I look pretty handsome! The first two pics are before and I still look cute but the last two pics are the final product and they really rock. :-) In the words of grandma, "How can one little boy be so cute?"
Wednesday, July 8, 2009
This is a little video of me showing mommy that my tummy hurts and I gotta poop or pass gas. Mommy has gotten pretty good at watching for clues and I've started grabbing at my tummy and such when it hurts. Since I can't talk to mommy or tell her what's bothering me I have to do something and this is what it is. :-)
Monday, July 6, 2009
Hello everyone. Just writing and checking in to tell you all that I had my neurologist appointment on Thursday and things went pretty well. We are now going to make the switch of weaning me off my Phenobarbital and put me on Topamax. The doctor said that it will probably help me be a little more alert and interactive and might be able to participate more in my different therapies and such. Just to let you know though this is a 6 month long process to get me off my phenobarb and on to the topamax. It has to be a slow weaning process because I've been on it for so long. Also he said there could be some possible break through seizures until the topomax reaches the level in my body that it needs to while decreasing the phenobarb but it will all work out. Mommy is a good sport and we'll make it through this. I go back to see the neurologist in 3 months which will be October 1 just to see how things are going with the whole process. Just another thing mommy has to try and keep straight because there is a certain formula that has to be followed each and every week through this whole process for 6 months until the phenobarb is out of my system. Mommy is still using the Melatonin and we are starting to see a little difference! I actually sleep for at least a solid 3 to 4 hours now! Again though this all takes time and we have until October as well to see if the Melatonin is going to work for me. So we'll see what happens. I wanted to mention too that we got word that I can no longer recieve my WV Medicaid because daddy makes $30 more than what's allowed. Yeah...it's pretty stupid but mommy is trying her best to see what she can do and so now we have to pay for every doctor appointment that I have like the neurologist we just saw and my pediatrician at the end of the month and so forth and so on. So, that's the latest news on what's going on here with me. Hope this day finds everyone well.