Gwendolyn’s New Pimped Out Size 2 EASyS Wheelchair + How To Pimp Your Own RideJune 12, 2012 by Bill Strong
Hard to believe (enormous understatement), but three-and-a-half adventure filled years have flown by since Gwendolyn got her size 1 EASyS wheelchair. She was just a baby when her size 1 arrived in November 2008 and we were in such a different place then compared to now. She's thrived over those years and that means that her growing-growing-growing-like-weeds-long-legs were starting to stick out of the front of the size 1 EASyS and her head was almost over the top of the headrest. To say the least, she desperately needed to move up to the size 2 EASyS.
Well, it's here -- and Gwendolyn couldn't be more excited! And these things don't just show up on your doorstep in an Amazon.com box. A ton of work goes into making things like this happen and we need to thank our awesome friends at CCS, Tri-County Mobility, and Exomotion/Thomashilfen for making the size 2 a reality for us. Please know that we all appreciate everything you do for our little girl!
I have to say I was emotional about seeing her size 1 EASyS go. I look at those four well worn rubber tires and think of all the incredible family memories we've had together -- many of which literally would not have been possible without the EASyS. We've always been mobile despite Gwendolyn's challenges -- she's demanded it. And our focus has been on putting what we can't control aside and making sure we're giving her as many experiences as possible. It started with her shiny red Radio Flyer wagon right after her diagnosis in March 2008 but we really hit the ground running when her size 1 EASyS showed up shortly thereafter. There was a point where we "just started living" but looking back it was getting that size 1 chair that was one of the most material, tangible factors that gave us confidence that there was almost no limit to what Gwendolyn could see and experience in the world.
We have had some incredible adventures in that chair. Those wheels have clocked thousands of miles across California and the United States and they were a big part of the ride for almost every memorable excursion we've had as a family. So, it was a bit emotional -- in a good way -- seeing that size 1 EASyS nudged aside for Gwendolyn's new size 2. But the big picture and reality of SMA is never lost on me and I know how incredibly fortunate I am to have been gifted this time with Gwendolyn and look forward to all of the wonderful experiences we hope to continue to have as a family. Welcome to the family size 2 EASyS -- can't wait to see what you have in store for us!
So, time to pimp Gwendolyn's new wheels! Out of the box the EASyS is an incredible wheelchair for those with spinal muscular atrophy (SMA), but there are a number of tweaks and tricks that have worked well for Gwendolyn and us over the years. And because we get out at least once a day, these simpe tips make getting out a little easier and a lot faster. And the great thing is all of these are super inexpensive and simple -- lots of Velcro straps and carabiners. So, we thought we'd share them.
How To Pimp Your Own Ride:
Suction machine >> We put Gwendolyn's suction machine in its bag and clip the bag to the handlebars of the EASyS using two 50mm (2 inch) carabiners. The carabiners clip to two galvanized steel o-rings that we attach to the handlebars using Velcro one-wrap straps. This all stays on the chair permanently (with the carabiners on the sides of the suction permanently), which means all we have to do is clip the suction on and we are ready to go. It's always within reach while out, stays clean in this space, and doesn't slosh around.
Pulsox machine >> We attach Gwendolyn's pulsox machine to the bottom of the EASyS foot plate so it's out of the way but visible. We put Velcro heavy duty strips on the top of the pulsox and on the bottom of the foot plate. And we also put a nylon strap with a clip buckle that wraps through the foot plate, around the width of the pulsox, and buckles tightly to secure the pulsox in place. We then secure the dangling wire with a small thin Velcro strip on the side of the foot plate. Everything is nice and secure and ready for running, spinning, or other fun.
Vent/bipap tray >> We use the standard vent tray that is an option from Thomashilfen, the EASyS manufacturer, which is made by SMA dad, James Garner. He also makes a larger "Addy Tray" for families who carry the Cough Assist machine with them. You can learn more at AddyTray.com.
Bipap machine and ambu bag >> We place Gwendolyn's Trilogy 100 bipap machine in the back of the vent tray with the display facing inward (so curious little friends aren't tempted to press the buttons). We keep it in its case to keep it clean, use the pockets on the case to hold the plug and an emergency cigarette adapter, and the strap makes transferring Gwendolyn on the machine easier. We then use a Velcro one-wrap strap to wrap the tubing up and secure it against the EASyS (see iPad picture). Gwendolyn's emergency ambu bag is also kept in a nylon bag to keep it clean and it is always right in front of her bipap in the vent tray.
Feeding machine >> Although we don't always need to take her Kangaroo Joey feeding machine with us, when we do we put it in the Joey backpack and clip it to the galvanized steel o-ring (the same one that we use for her diaper bag) that we attach to the handlebars right in front of the suction machine o-ring using Velcro one-wrap straps.
Pillow >> We use the Go-Anywhere pillow from SMASupply.com and a small, soft homemade pillow on top of that to support her head.
Umbrella >> We use the Sun Smarties clip-on umbrella and we attach it directly to the stroller support bar on the right side (when you're looking at Gwendolyn in the chair). It is small and folds down nicely for the days we don't need it, but is always attached just in case. ***The dark colors are the best option as the ligther colors allow sun to come through.
Sun shade >> We use the standard sun shade that is an option from Thomashilfen, the EASyS manufacturer. When we're not using it, we roll it up and secure it with a Velcro one-wrap strap.
iPad holder >> We have attached a Joy retractable clip mount to Gwendolyn's chair on the left side (when you're looking at Gwendolyn in the chair) to hold her iPad. This makes using her iPad and Say Hi! AAC in school really easy. ***Be careful not to travel with the iPad in the holder, however, as the part that holds the iPad has a tendency to disconnect from the arm.
NEVER GIVE UP. lunch tote >> We clip a theGSF NEVER GIVE UP. lunch tote to hold sanitizer, antibacterial wipes, a sun hat, SMA information cards, etc. to the galvanized steel o-ring and carabiner that we attach to the side of the handlebars using Velcro one-wrap straps. This small size bag is perfect to hold a few entertainment items and the iPad can travel safely in it too. This is on the left side when you're looking at Gwendolyn in the chair.
Diaper bag >> We clip a small diaper wallet to hold diapers and wipes to the galvanized galvanized steel o-ring and carabiner that we attach to the side of the handlebars using Velcro one-wrap straps. This is on the opposite side of the lunch tote so it is nicely balanced.
Night light >> We attach a Bell iPulse bike light to the middle of the handlebars so we can see Gwendolyn at night or in dark places.
Hayden's Comfy Cushies >> And lastly we transferred the personalized cushion pad created by SMA grandmother, Shelly Calafiore, from Gwendolyn's size 1 chair to her size 2. It fits perfectly and helps keep Gwendolyn extra comfortable for the long hours she is in the EASyS. Shelly does an incredible job personalizing each pad to be extra special for the child and everyone always makes a comment to Gwendolyn about how pretty hers is -- and that makes for a great start to making Gwendolyn feel extra proud about her EASyS wheelchair!
We hope these tips help you get out and about this summer. We know Gwendolyn will be breaking in her new ride all summer long!