Last Day

Posted on 26. Jul, 2011 by Jillian in Glycogen Storage Disease

Phew, we made it. We were released Thursday about noon, so we had the rest of the day to play and relax. We decided to go swimming while it was hot. So, we loaded up with snacks, glucometer, test strips- oh yeah, and towels- and headed to the pool.

I now know why my mother never bothered getting in the pool when she took us swimming. After 5 minutes, kido #3 had to go back inside for the bathroom. Lucky for us we were on the first floor. By the time I got back outside, #4 had to go in. When we came back out it was time to test BGs. Most were doing well, and only one needed to eat carbs. By the time that was divied out, Ethan decided to do a cannonball. SPLASH. So much for me not getting wet. When he came up for air, he let us know that his g-tube balloon had burst. Seriously?!?! Ok, back inside to replace a g-tube.

This is the first Florida trip where we’ve had to replace a tube, so I’m really glad I still packed those bulky boxes. Unfortunately, I didn’t remember to pack the KY jelly, that makes it slide in smoothly. He decided (with just a little reasoning/ bribery) to let me replace it without the jelly. He was so brave! It took a little longer, there was a little blood, but he didn’t cry at all, and was able to calm himself down, even when it hurt.

After that, he was raring to go swimming again (which was the bribe), and Ben and the boys were still going strong. A few more bg tests, and it was time for showers and cartoons so mom and dad didn’t pass out from exhaustion.

Dr. W. came by the hotel to drop off our discharge paperwork, (I know, personally delivered, what other doctor would ever do that???) We told him about the g-tube incident and his response was something like ‘Really??? Well, you’ve had enough go wrong in one trip, the rest should be a breeze.’ If I were superstitious, I’d swear he jinxed us.

Dinner was fun because I got to use my new dietary guideline book at the Olive Garden (my favorite place to eat). It was shocking to see how much more I’d been giving the boys than they needed at restaurants. The Olive Garden was incredibly accomodating. They had new “healthier” kid menus they were testing out, and the manager came over to help us with nutrition facts, and actually showed interest in GSD. Kinda neat.

After that we went to the Bat House, and finally back to the hotel to pack. The next day we wanted to take the boys to the La Chua Trail (which was the highlight of last year’s trip), but the stress was catching up to us, so we slept in instead. After breakfast it was time to start our trip back to Orlando to catch our flight home.

Lucky for us, we decided to leave 3 hours before we needed to be at the airport, even though it’s only a 2 hour drive.