Glycogen Storage Disease – StarchWars

Busy October Post #1

Posted on 20. Jan, 2010 by Jillian in Glycogen Storage Disease, Glycogen Storage Disease Type 1A, Traveling, hypoglycemia

Trauma/Drama/Excitement: We went on our first family vacation with all four of our boys.

Prep work: I made sure to pack for every conceivable medical emergency. Along with our “normal” medical supplies we accessorized with a feeding pump and bags, extra gastrostomy tubes (not just the extensions), dextrose, etc. Plus, I mapquested our route to/from the airport, as well as the closest hospital with decent online reviews- since I will never entirely trust Naggie Maggie GPS ever again! Oh, and of course the closest In-n-out Burgers. Mmmmmmmm. I think I’m drooling thinking about it. You eastern folks have no idea what you’re missing.

Wednesday: Flight from Boise to San Diego

What we learned:

Southwest Airlines doesn’t charge for your first two checked bags, or medical bags, and they’re VERY kid friendly. Loved them.

It took 15 minutes to test our liquid Prosobe, but the airport screeners didn’t even blink at our 15 pounds of white powdered substance in individually marked by gram ziploc baggies, or our gram scale. I also caught some slack from the screener for bringing an “excessive” amount of liquid on board for such a short flight. I had enough to make it through the day, as well as one extra unopened can in case someone got airsick. She also implied that a good mother would have her kid off infant formula when he’s 2 years old. I tried to explain, but she really didn’t care. Someday, I might forgive her- I’m sure she’s already forgotten me.

Screening is also MUCH easier when you have a 1-on-1 ratio of adults to GSD kids. It was nice traveling with family.

Where to stay: My parents rented a large, beautiful house for all of our family to stay in.

What we learned: Having a kitchen to prepare and store food made the GSD dietary restrictions and schedule much easier (and cheaper) than trying to eat out for every meal like we would at a hotel. I’m a fan.

Thursday: San Diego Zoo- Fun! Fun! Fun! The boys loved the animals, especially the polar bears and oddly enough otters.

What we learned: October is “kids get in free” month, AND anyone with a “disability” is allowed one person to accompany them for free. I had a fabulous note from Dr. Weinstein, but all I really had to say was “life-threatening disease” and bada-bing bada-boom, we were all in for free.

Monkey leash backpacks are the best invention since bolus feeds.

Bring your own food, and test blood sugar frequently. The boys’ blood sugars dipped a bit from all of the exercise, excitement and fun in the sun.

The San Diego Zoo does not use plastic spoons. Their spoons are made out of cornstarch. I wanted one for a souvenier, but we didn’t get around to it.

Rehearsal Dinner: Skip forward a couple of hours and we’re showered and at the Rehearsal dinner. It was an absolutely beautiful site, but the kids were pretty tuckered out and rather crabby, and let’s face it, Ben and I were up with 2am cornstarch too, so we weren’t exactly chipper either. Given the circumstances, they were very well behaved. I will forever be thankful to my husband who walked the kids around (and got some fabulous photos of the them) so I could be with family I don’t often see. Seriously, he’s amazing.

The dinner itself was a little tricky to get to in downtown San Diego, but the food and company were great! It was about 11:00 our time when we got back to the rental house, exhausted. By the time we got all of the kids in bed, all of the med supplies unpacked and cleaned, more formula mixed up, and all of our nighttime cornstarch layed out it was closer to 1:00. We decided to just stay up and watch something on Hulu until 2:00 starch.

What we learned: Never leave your medical bag in a room that is possible to be locked up before you leave. I’m getting pretty good at mixing/ administering cornstarch in the car. And, it’s easier to stay up until 2:00 cornstarch, than it is to wake-up for it.

Friday: We did another ½ day at the zoo, and then took on the beach for a couple of hours- after yet another stop at In-n-Out. Ahhhh.

What we learned: Ethan is a beach-aholic! It was nearly impossible to get him out of the waves, even though it was cold and rainy. Dallin dislikes the beach almost as much as his mother. We stood on the shore in a couple of jackets shivering and in charge of frequent blood sugar checks, snacks and towels. Kudos to Ben for sticking it out in that water with three boys for as long as he did.

Friday night: We had a very fun “out of town guests” Hawaiian party hosted by my brother and his bride. Fabulous food, balloons, a wii, and even a bounce house. It was a great time to mingle with all of the out of town family that came to celebrate. We even had a chance to show off a g-tube so someone could compare it to their mother’s g-tube.