Sunday, August 10, 2014

SMA Awareness Day 10--Pool flop

This morning I had visions of getting all sorts of things done.  Well, it wasn't looking like it was going to happen so I quickly amended my plan and decided the only thing I really wanted to do today was to get the boys into the pool.  That took the pressure off :)

Julia was working today (PCA) so we figured we'd be able to handle the pool with the 3 of us and Aunt Chris.  We still didn't really have enough 'handlers' to put them both in at the same time.  It was COLD!  These cool nights sure don't do anything good for the pool temperature.

Casey was okay but didn't love it.  He takes a lot of careful holding/monitoring in the pool because of his trach.  I have a couple of holds that I use and switch off every once in a while.  I've learned over the years how to use my body as a support for him so I can hold his head and watch his trach and not get too tired.  It's also a struggle for Gene to get him up and over the edge but we have a little plan and we all do our part to make sure Casey is safe.

Colin went next.  I was really hoping he'd like it more than he did today.  He really can move himself in the water and it must feel soooo good to him.

I think they would have liked it better if they both were in at the same time.  They like to bat the ball back and forth and carry on and it's not quite as fun without the other :)   And, it truly felt cold to me, although I warmed up pretty quickly.  I think the boys have a harder time warming up because they are thin, and because they can't move through the water like we can so the chill sets in.  But they were good sports while the other did their thing in the water.

So, it wasn't a total flop since everything went smoothly but I had been hoping they'd enjoy themselves more.



Random posts from the past-two post because one is a continuation of our night:


We saw the Rocket Man!

cure sma
We had an awesome time tonight!  Everything went flawlessly--no formula accidents, parking was easy, seating went fine, we didn't forget anything, and there were CLEAR Skies and a breeze!  It was actually a perfect night for a show.  I didn't bring my camera because I followed the "rules."  Of course we had Gene's phone and took a couple of pictures, but they won't be so great.  I'll have to steal some off of one of the news web sites.

The boys are in bed.  We have the boys tonight so I have to go and get my stuff and hunker down in the wish room.  I'll update more tomorrow.  I'll just say that we heard some of our favorite-est songs:  Good-bye Yellow Brick Road, Rocket Man, Tiny Dancer, Saturday Night, Sacrifice and Crocodile Rock.



Here's the news story from WCAX TV

Elton John Concert Rocks Vermont 
Essex Junction, Vermont - July 21, 2008
One of the most anticipated shows in Vermont history rocked the state on Monday night; Elton John performed to a sellout crowd at the fairgrounds in Essex Junction.
The Rocket Man sent more than 10,000 fans into orbit with his first-ever show in Vermont. But before he hit the state, the flamboyant performer met with reporters and tasted the limited edition Ben and Jerry's ice cream flavor made in his honor, aptly named "Goodbye Yellow Brickle Road."
Sir Elton was glad that the rain stopped and let him play his first Vermont show in full force. "I love America," he said. "I came here in 1970 for my first show in California, and it's taken me, well, 39 years to get to Vermont, but it's worth it and I love this country, and I wanted to play in every single state"
Fans who waited months, if not a lifetime for the show, were not disappointed.
"We were really excited," said Geoff Gadbois of Milton. "He may never come back again, so it was great."
Kate and Jimbo Petraska traveled from Hanover, NH, to see the show. "We just got married last week, so this was really special for us," Kate Petraska said. Elton John even played the couple's favorite song, 'Tiny Dancer.'
Sir Elton John played for over two hours, and certainly gave 10,000 people a rocking Vermont night that they won't forget any time soon.
Jack Thurston - WCAX News

more on our Elton John concert

cure sma
We packed up and headed out by a little after 6:00.  We made it down to the fair grounds and sailed right through the gate.  I imagined that we would have been waiting on a line.  We were sent to a great handicapped spot so no one would park next to us on our lift side.

We headed into the grounds and walked around for a bit.  Nancy R and her mom found us pretty much right away.  It was kind of hot so we stood with them in a shady spot and chatted for a while.  Saw Heather F and Gene saw some friends, too.  Gene and AC and Colin went in search of some food.  They came back with some Al's french fries that were really good.  I just HAD to get a fried dough, too!  Nancy bought a program for $20 which we showed to Casey.  He was kind of weepy.  He said his 'privates' hurt.  I guess they were manipulated quite a bit and I imagine they would hurt!  He wanted to be shifted in his chair quite a bit.  We didn't have his DynaVox with us since it would have been a little crazy with all the people and I didn't want to get it damaged or possibly rained on.  I know he wished he had it because he was kind of frustrated.

Gene had one little incident when they were out scoping out food.  I guess some excited woman was jumping up and down and yelling to a friend and somehow she ran into Colin's chair.  Gene was pissed!  She made it seem like it was his fault and kept saying, "Ouch, that hurt, ouch, that hurt!"  Gene was furious and called her a bad name.

We headed up to our seats.  The handicapped seats were already getting filled up.  We had seat numbers on our tickets but they didn't adhere to them.  We got good seats about middle way down.  Some people ended up being behind us, but I still think they were able to see fine.  What kind of freaked me out was that there was no covering over our seats.  Gene asked the usher and she said they were busy painting everything and that it would be back in time for the fair--geesh, I was counting on having it overhead for rain and/or sun purposes!  Luckily, there was a nice breeze and it had cooled right down by the time we got up to our seats.

We had a while to wait so we people watched.  Lots of people came up to us:  Tom G, Terry, Paul, our RT, and Kathy and her friend.  Kathy cheered Casey up because he was grumpy at first.  She got him to feel better.  She promised him that she'd be back for the Crocodile Rock and dance for him!

It finally started, and it started with a bang!  The boys were fascinated!  Elton John played and played.  He talked a little bit, but mostly he played and sang and played and sang.  The audience was respectful and excited and very into it!  He dedicated Good-bye Yellow Brick Road to everyone at Ben & Jerry's.  He seemed honestly to be very pleased with his reception in Vermont and his experience, albeit short, in Vermont.

I held Colin for a bit but then he complained about something hurting so he spent most of the show in his Kart, but he loved every second of it!  His eyes were huge and he was totally focused and into it.  Casey had his moments when he was fussing but overall he loved it!  He was very excited to hear Saturday Night's Alright and Crocodile Rock and Rocket Man! 



Set list:

  • Funeral For A Friend
  • Love Lies Bleeding
  • The B*tch Is Back
  • Madman Across The Water
  • Tiny Dancer
  • Levon
  • Believe
  • Take Me To The Pilot
  • Goodbye Yellow Brick Road
  • Daniel
  • Rocket Man
  • Honky Cat
  • Sacrifice
  • Don't Let The Sun Go Down On Me
  • I Guess That's Why They Call It The Blues
  • Sorry Seems To Be The Hardest Word
  • Candle In The Wind
  • Bennie And The Jets
  • Sad Songs
  • Philadelphia Freedom
  • I'm Still Standing
  • Crocodile Rock
  • Saturday Night's Alright (For Fighting)
    Encore
  • Pinball Wizard
  • Your Song

    I didn't even feel Gene getting antsy about leaving, which is a good thing!  Usually he starts worrying about getting out safely and quickly so we don't get trapped in traffic.  But, once the encore came, we both felt the need to hightail it out to beat the crowd.  It's a little different when the fair is going on since people stay after the shows and don't all depart at one time...But, this is the biggest concert EVER in Vermont with over 10,000 people attending.



    So while Pinball Wizzard was going on, we headed out.  Of course other people were heading out, too, but we didn't have much of a problem once we got out of the immediate area and into the lighted areas.  We heard Your Song while we were walking and loading into the van.   We got right into an exit line and whoosh, we were out and on our way home.  We called Grandma O to see if they heard the show, but they didn't hear anything.  Maybe the wind was blowing the other way!

    We made it home by about 11:20 PM.  Gene and made a pretty smooth transition to bed/pjs/etc.  Colin was out in minutes.  Casey stayed awake until at least midnight!

    I got my stuff and read for a while and then slept in fits and starts.  Colin only wanted to flip twice, and Casey wanted to flip 3 times.  I had some crazy dreams and I kept waking up--must have been the fried dough!

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