Monday, April 15, 2013

Disney Trip - Day 4

Here's the next Disney post, maybe 15 minutes after the last post. How is that for content generation?

Day 4, well, day 3 really, we had reservations at the SciFi Diner at MGM, so our destination was set when we dragged ourselves out of bed. After yet another late night spent playing games in the arcade, we once again got a late start that morning. I believe we finally got our gear together and made it to the bus stop around 10AM. The whole way through the resort we were stuffing snacks into all available facial cavities with Lisa grumbling that she would really like to eat a real breakfast for once.

The bus picked us up at the terminal and we walked through the gates at MGM somewhere around 10:30AM.


"Where are the rest of the Disney posts?" Right?

I'll get around to it. In the meantime, I'm trying to reorganize my notes. We are coming up on the 1 year anniversary of Talen's diagnosis, and just passed the 1 year anniversary of Chris's murder (another story, maybe I'll post another time), and I'm trying to pick back up some of the things I dropped last fall.

I'm cleaning up the links, putting the originating organization and date on each. I am also putting a brief summary of each treatment on the page (no more than a couple of paragraphs) and a super-short synopsis at the top of the page.

So here's the first one, going alphabetically, in the OTC treatments: Arginine

Wednesday, April 10, 2013

MDA 5K Run

I got this in my inbox from Lucas Coe, who is one of the coordinators for the MDA in the Charlotte area:

Hello there!

I wanted to share a great opportunity with you.  One of our Camp Counselors from last year’s Summer Camp was so touched by what MDA does that she has started a 5K to raise money for MDA.  If you are like me, you probably don’t run yourself, but know people who do, so I wanted to send this along so you can share with any friends you have who are runners.  If you have any questions, please let me know!

From the Camp Counselor, Lisa:

After volunteering at MDA summer camp, I really wanted to find a way to raise money and help more. The campers are so awesome and, as a Winthrop cross country and track athlete, the best way I could think of was to have a 5K fundraiser titled "Run For Those Who Can't." This race will be held on April 27th. Check in starts at 8am and the race will take off at 9. It will start from the Winthrop coliseum, in Rock Hill, SC, loop around a lake, and will finish on Winthrop's mondo track. Just like camp this year, there's a superhero theme for whoever wants to dress up! The last day to sign up with the lower pricing and get a t-shirt is April 13th. It should be really fun, and of course, is a great cause. You can sign up through the PayPal link at the event page:

Lucas Coe
Lucas S. Coe
Health Care Services Coordinator
The Muscular Dystrophy Association
1515 Mockingbird Lane # 701
Charlotte, NC 28209

Lucas has been a lot of help over the past year, and we didn't make it to the MDA Muscle Walk in March, so I figured the least we could do was pass the word along. Lisa has been wanting to run in a 5K (she's talking about doing some zombie run), so maybe if a few other people are interested I can get her to sign up also...

Thursday, April 4, 2013

Disney Trip - Day 3

Day 3 of our trip was actually our second day at Disney World in Orlando. We had made a number of reservations at restaurants *way* ahead of time, so our itinerary was defined in terms of which parks we would be going to. We hopped out of bed a little late due to our late stay at the Magic Kingdom the day prior, shoved some snacks in our faces, and rushed out to the bus stop to head back to Magic Kingdom.

Tuesday, April 2, 2013

Disney Trip - Days 1 and 2

I thought it might be worthwhile to put up some of the highlights from our Disney trip. After the initial shock of Talen's diagnosis settled in and we had time to absorb what it meant, we started to worry about things that we had assumed could be postponed until we were in better financial shape. The fear we had was that, by the time we were able to do some of these things, the disease would have progressed to a point where it might be difficult, if not impossible, for Talen to enjoy it.

Fortunately, we had a lot of people around us who stepped in and made a trip to Disneyworld happen a lot quicker than we could have ever managed on our own. I feel like the list of people we have to thank for this trip would warrant a post of its own, but at a minimum I think I should acknowledge the help we got from Jon Harpootlian, Shannon Daggett, Brett Butler, and all the folks from the Crown Point bus stop.

So here are the first couple of days...