The End

The End

Posted on 14. Jul, 2009 by in Glycogen Storage Disease, Hospitals

After our annual photo shoot with Dr. Weinstein, Dallin started screaming bloody murder because I told him he needed to leave a motorcycle toy he’d gotten from the hospital playroom. Dr. Weinstein, of course, told him to keep it. Two months later, it’s still his favorite toy.
We hit the road and an hour and a half later checked into a hotel in Jacksonville. We stayed at a La Quinta Inn and Suites. Definitely don’t recommend that hotel, but I’ve stayed in worse. My dad told the boys that if they were loud in the hotel that the alligators would find/ eat them- thus effectively destroying our plans for going to the alligator farm the next day.
We went out to eat, potentially almost losing a child to kidnapping (that was scary), and then went back to the hotel to repack for another day of fun filled adventure and the return flight. The packing required two “medical bags”. One for the morning, and the second for the airport. I finally finished around midnight, and we were up and running at 6am- with short waking periods for cornstarch.
We spent the morning at St. Augustine where we were 3 minutes too late to see them shoot the canons at the old fort. It was pretty hot and miserable, but really neat to see the oldest school house in the U.S. Not exactly little kid friendly, but I enjoyed it. I almost got hit by a tour bus (my own flaky fault), but otherwise, pretty uneventful.

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We then tried to take the kids to the beach. This time, relying on Naggie Maggie GPS to get us there. Unfortunately, a new freeway had been constructed since her programming, and we spent a couple hours as a blinking dot on a green screen.
We finally got to the beach, and were even able to find a parking spot. We only had time to stay about 30 minutes, but that was enough with all four boys.

This is the first time they’d ever seen the ocean, and I was able to teach them the delicate art of wave chasing, picking seashells, and building sandcastles. Ok, we didn’t actually build a sand castle because I didn’t want to spend the next 12 hours in airports with sand in my pants, but… we got to look at some nice ones.

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We were able to get the airport and turn in the car without too many misdirections from Maggie, and I feel sorry for whichever poor rental car agent that had to clean out that minivan.
Checking in was a challenge because they had difficulty finding my dad’s reservations, so we were running a little late by the time we finally got to security. (“Late” by my dad’s standards means we only had 68 minutes to get through security and walk to our gate). Metal detectors and drug checks were as fun as ever, but security was exceptionally nice about it.
Our only snag was when my dad asked a security officer something about the laptop we were carrying-on and the officer said “Wait here.” So, my dad waited. The laptop came, I got all of the kids re-shod, and the stroller re-packed and still, my dad was standing next to the conveyer belt. I asked what he was waiting for and he informed me that if I wanted him arrested for a felony by disobeying a security officer’s orders of “wait here” then by all means I should drag him to our gate. Five minutes later there was still no sign of the original officer who instructed him to wait, so we asked another officer what we were waiting for. Five minutes after that, the second officer returned and said that the first had clocked out 10 minutes ago, so he assumed we’re good to go.
The gate wasn’t too far from the security station, my dad took the boys for potty breaks while I requested seating together. Then it was my turn to run the little boys (individually) to the bathroom for diaper changes before we took off. It wouldn’t have been so bad, except the closest bathroom was out of order, and the electric walkway was too. So, after jogging to and fro a couple of times, we made it back with 40 seconds to spare before boarding.
The flight was pretty easy… normal squirming, but overall, well behaved kids.
Leaving the plane Dallin, suddenly started screaming. We couldn’t figure out why until we saw a flight attendant chasing after us with the “Dr. Weinstein motorcycle”. Crisis averted, thank you Delta, thank you. We’d requested transport, as always, but of course it wasn’t there. We did, however, see a cart drive by us and I tried to stop him, but he avoided eye contact. A couple of minutes later the same guy was driving next to us. I made eye contact this time, and was about to ask for help when he stopped for the woman walking next to us- wearing the mini skirt -and left as soon as she got on. Oooooooh, I was MAD. By this time it was about 10:00 or 11:00 pm local time, so at least it wasn’t crowded. We passed the mini skirt woman a few gates before reaching our own, and before we had time to set our stuff down and make seating arrangements, my dad walked off, without saying a word. I think he needed a little “alone time”. However, he did return bearing gifts of fast food. The kids screamed and ran around no matter how much I told them to sit down, and I got some pretty interesting “Why can’t you control your children???” and “Please tell me they’re not on my plane!” looks from fellow passengers. The flight left pretty shortly after that, and the kids were calm-ish and slept most of the way home.
Ben had just driven 5 hours to get home from his business trip to Utah, and had just enough time to go home, switch cars, and come and get us. I have never in my life been so happy to see him! Since it was technically past midnight, and therefore Mother’s Day, he even had a dozen roses waiting for me. He’s awesome. I slept the whole night, and even slept in until 9 am- without any guilt.
My dad went home, and according to my mom, slept for 3 days straight. “What did you do to him?” was her only question.
He still gives a little shiver and refuses to answer any questions related to his “Florida vacation”. He also refuses to believe that this was by far the easiest trip to Gainesville that we have ever had.

THE END
~well, at least the end of the travelouge.

4 Responses to “The End”

  1. Jacqui

    16. Jul, 2009

    Hi jilian! My name is Jacqui, and I also have Glycogen Storage Disease. I have von Gierke 1A. That’s an interesting story about you’re trip to Florida. Sounds like you had a nice time seeing the beach, but you also have to deal with the extras in traveling because of Glycogen Storage Disease. My family would be in your position when traveling – they know exactly what it is like to look after someone with GSD. I think that your vacation story can relate to many other families that deal with GSD regardless if they have just one family member with the disease. Good luck to you and your family, and I hope that things will continue to improve as time goes on.

  2. Jillian

    16. Jul, 2009

    Hi Jacqui, thanks for the comment. I always love talking to older people with GSD because I have no idea what GSD feels like, and my boys are still a little too young to tell me. :) Are you a member of http://gsdlife.org ?

  3. Glenna Paguio

    17. Jul, 2009

    Hi Jillian aka Supermom! It’s Glenna from GCRC at Shands. I just got another job! Guess what? I’m in Dr. Weinstein’s team now. I will be helping him by taking and returning phone calls and emails. I will be doing this in the evenings after my day’s work at GCRC.
    Glad you made it to the beach and the I’m sure the boys had a blast! Hope the new schedule for all the boy’s cornstarch is working well for the whole family. Regards and stay as energetic as you are!

  4. Erika Daniel

    16. Dec, 2009

    HAHAHA…..I remember Dallin screaming about the toy! Hope everything is going well. Can’t wait to see the boys when you guys come back!

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