Amazing GSD Conference

Posted on 29. Oct, 2007 by Jillian in Glycogen Storage Disease, research

We just got back from our trip to Utah’s first, and hopefully annual, GSD conference. It was incredible! We came back with pictures, memories, videos and more. We feel exhausted and energized at the same time. There is so much to blog about that we’ll have to divide it into sections. So, this post will start at the beginning with planning and actually getting to the conference.
The chaos started a few days before the trip with planning the packing- and the actual packing. I’ve gotten smarter the last couple of years, and have started making an excel spread sheet of all the stuff we need to take with us. I leave blanks for how much of each thing we need to bring, and that way I can customize it for each trip.

I’m still amazed at all the extras we need to bring, such as a feeding pump for each kid in case they get carsick, plus bags for the pumps, and extra formula for the bags for the pumps and tubes for the bags for the pumps… etc. Extra g-buttons in case one falls out, extra “good for you food” so our gracious relatives don’t need to worry about it- even though they did. Not to mention the extra pre-measured cornstarch in case we have car trouble, there is a wild fire on the 215, or Transformers take over the Utah/ Idaho state border. Each trip is different, but the spreadsheet helps ensure that I forget fewer essentials (like the infamous can opener) each time. Maybe in the next 10 years I’ll have perfected the list enough to remember everything. Hey, a girl can dream.

One of the best things- we weren’t as limited on was space. We were able to pack activities in one backpack, diaper supplies in another, and medical supplies in another. This kept things much more accessible, and since we weren’t lugging it through the Atlanta airport, the limited number of bags (and children) we could strap to various appendages wasn’t a factor. My favorite “extra bag” came in the form of a morning and an afternoon cornstarch/ medical bag. We packed the first bag with enough formula, starch, syringes and gloves to get us through the first half of our travel day, then another bag to make it the rest of the day. It was great to swap the cornstarch coated syringes etc. for a brand new non-sticky bag when we reached our first destination. The Hogle Zoo.

The boys LOVED the zoo. The last time we’d been there, we were in the process of a GSD diagnosis. The boys were content to lay in the stroller and look at the animals. This was very different. They were running and playing as energetically and enthusiastically as all of the other kids. Other than stopping more frequently for snacks and cornstarch, we felt like any other family there.

After all that excitement, we landed at Ben’s Grandpa’s house where we ate a very nice GSD friendly meal, and the boys had a hay day playing with Grandpa and all of his new-to-them toys. One of their favorite parts of the entire trip was “camping” out in Grandpa’s family room and watching the stars (AKA glitter) on the ceiling. We brought playpens for Jonny and Dallin to sleep in. A necessity, since we can’t trust Jonny farther than we can grab him- let alone when we’re asleep, and Dallin is still on a feeding pump at night.

We forgot alarm clocks- one more thing to add to the spreadsheet, but we borrowed one, and used our cell phones (placed out of arm’s reach) as back up alarms. It meant that we couldn’t allow ourselves to sleep as deeply for fear of missing an alarm, but the boys slept like champs, even sleeping in a little extra so we could catch up on a little more than usual sleep.

The next morning we had a wonderful breakfast, thank you Marcia, followed by a nice time just visiting with relatives. The GSD conference was held at the Make-a-Wish Foundation at noon (only a mile or so from Grandpa’s house), and that is where I’ll end my narrative for today. We have so much to share, and videos to post, that it wouldn’t do it justice to begin tonight.