Sunday, November 7, 2010

Artilepsy

I got out TWO days in a row this week! Friday night we went to the Artilepsy exhibit opening. Here is a clip with the Epilepsy Association of Utah's president, Kris, talking about the exhibit. Sorry the quality isn't that great. I apologize for the buzzing and have no idea why it is that shape. Can't fix it.



Here
is another way to try and view it.

We had a great time meeting up with our friends during and afterwards and enjoyed the pieces. It is always especially nice to spend time with the other Dravet families. We don't get to see each other often. I am glad that the Neurosciences Center wanted this. It proves that people with epilepsy, even Dravet Syndrome, can still be very creative and produce beautiful art. There was photography, paintings, wood carving, quilts and more! Thanks EAU for inviting us ;)Saturday we went back for the EAU's annual conference (their link is on our sidebar). I appreciated getting to hear about the research going on at the U and did not recognize that 13 of the AEDs (anti-epileptic drug) that are on the market were researched and brought to the marketing phase, right here in Utah. I knew that it takes 15 years for a drug to go through all of the testing and get approval, but it does seem that there are some new ones on the horizon that are in a different class of medications than the ones that are available now. Hopefully they come about in time to be a benefit for our kids. The class on surgery was enlightening, even though neither Cole or I are candidates. I think Kris did an excellent job on the Caregiver Stress class and reminded us, once again because we forget, to put ourselves on our list of priorities. I know that I fall off of that top three list often. Therefore, I am laying in bed, fighting off this imminent bronchitis, strep, sinus infection or whatever it is that is brewing. You know when it hurts just to swallow? Yep. Don't have time for it. I think that one of the best parts of this weekend was getting to spend a little one on one time with C aka Bertrand's Mommy. I love her! Plus, she bought my lunch...who wouldn't love that!

If you live in the 'Tah, I suggest going up to the Clinical Neurosciences Center and just browsing the exhibit. It has over 40 pieces, but is in a concentrated area on level 1 by the auditorium. The CNC is behind the University Hospital. The exhibit runs through December, just in time for Epilepsy Awareness Month. Wear purple!

2 comments:

  1. Hi Niki! The exhibit sounds wonderful. I wish I could be there! Did Cole or B enter anything? I can't imagine how you would have found the time, but at least you were able to go see it, which is great.

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  2. You didn't mention providing multiple feasts for a particular NICU family over the course of your visits. I am so sad I missed seeing you twice though. How dumb. We are so grateful (and full.) A thanksgiving type meal was perfect after that terrible, terrible game on Saturday. It was very comforting.

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