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Posts tagged with: Transportation

Hayden’s Comfy Cushies—> Must Have Padding for the EASyS

March 10, 2011 by Victoria Strong

SMA families are exceptionally creative -- out of necessity and out of devotion. And Hayden Calafiore's grandmother, Shelly, is proving this once again. There is pretty much one stroller/wheelchair option for SMA Type 1 families -- the EASyS. The EASyS is an awesome chair and we have recommended...

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Power Chair—Get the G-Team Van

July 02, 2010 by Victoria Strong
The power chair is being ordered!!! Hazzah! After almost a year of preparation, trial and error, Jerry-rigging, tweaking, and lots of practice, practice, and more practice, we have found a system that works for Gwendolyn and she is ready to hit the road.

Gwendolyn's disabilities are such that we...

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We Have Ramps!

April 14, 2010 by Victoria Strong

We have ramps for our car and this is BIG news around here! Probably seems crazy, but up until recently we've actually been lifting the entire stroller loaded with Gwendolyn and all the machines into the van (the "we" means Bill because it all weighs over 50 pounds). Ramps have clearly been a...

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Gwendolyn's First Steps

November 03, 2009 by Bill Strong

Over the last month we've been prepping Gwendolyn and getting her comfortable with her hot pink demo power chair at one of her therapy sessions every week. She's taken baby steps, as usual, warming up to the idea at first and slowly making her own decision when she's ready to take the next step.

...

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Warming Up To The Power Chair

September 30, 2009 by Bill Strong
On Monday, we had very exciting "first" -- and much sooner than we anticipated. Gwendolyn got to see and try a Permobil K300 power chair. And it was hot pink!

Our experience with new things, especially big new things for Gwendolyn, is that she needs a warm-up period to get used to the idea and,...

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Possible Solution to the EASyS Stroller Storage Shortfall

July 22, 2009 by Bill Strong
Like us, many SMA families use the EASyS wheelchair stroller from ExoMotion to get out and about. Given what we take out with us we haven't found space on the stroller to be a problem, but we've heard several other families have had issues with the limited storage space in the tray underneath the...
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Girls Weekend

June 15, 2009 by Victoria Strong
We had a big weekend! For the first time since Gwendolyn's SMA diagnosis, it was just us girls. It was Nick's bachelor party (Bill's best friend) and Bill really wanted to be there. So over the last few months we have been talking about Bill going away and I have encouraged him that I would be...
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Wagon Ride

March 22, 2009 by Victoria Strong
With the nice weather we have been enjoying wagon rides in the back yard. Gwendolyn loves this. The wagon was kindly given to us by Families of SMA right after Gwendolyn's diagnosis and we initially used it as our only mode of transport -- you can see it keeps her nice and flat. But, now it is a...
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Accessibility for the disabled

December 22, 2008 by Bill Strong
I never realized how truly inaccessible the world is for those with disabilities until our experience with Gwendolyn -- and I'm not even the one with the disability. When we transport Gwendolyn, on walks or in the GVan, we live in a constant state of planning ahead to make sure we can get from...
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Our experience with our hospice

December 07, 2008 by Bill Strong
I'll never forget being in the hospital at Stanford and again at Cottage Hospital in Santa Barbara and our social workers mentioning that we consider going on hospice. Despite Gwendolyn's condition being terminal and the fact that we were completely, utterly lost on how we were going to make this...
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Gwendolyn's New Wheels

November 20, 2008 by Bill Strong

Gwendolyn has a shiny new stroller, the ExoMotion JAZZ EASyS, and she is absolutely loving it!!! Although the Quinny Buzz Dreami stroller worked really well for much longer than we ever anticipated, Gwendolyn's long legs were busting out of the end of it -- literally. Something tells me the...

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Sunday stroll on the coast

September 16, 2008 by Bill Strong

We piled into the GVan on Sunday and took a stroll along the
coastline. It's so much easier now that we broke down and got a mini-
van. Gwendolyn slept in her stroller most of the walk, but she loved
feeling the wind in her hair once she woke up.

One thing kind of funny that we've noticed is that she...

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Stanford cattle-run

September 09, 2008 by Bill Strong
We all had a wonderful time with Gramma last week. Gwendolyn loved
playing and swimming and just plain being spoiled (we were all
spoiled). We arrived back home on Sunday via our new mini-van (the G-
Van) and our house was actually in pretty good order given the
extensive surprise plumbing project...
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Stanford Here We Come…

August 02, 2008 by Bill Strong


I just loved this picture of Gwendolyn...

Next week we'll be heading up to Stanford for a week to meet with Gwendolyn's amazing doctors, Team Gwendolyn smile We can't believe it's been three months already since we came home from our first trip up there. On one hand it feels like it was just yesterday...
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Gwendolyn rocks the Santa Barbara Courthouse

June 28, 2008 by Bill Strong





Ok, it wasn't exactly rocking, it was live, local jazz outside at the Santa Barbara Courthouse Sunken Garden, but we all had a great time together on Friday evening and THE QUINNY STROLLER HAS OFFICIALLY REDEEMED ITSELF. Victoria reached deep into her bag of tricks and cooked up a creative way to...
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BatteryGeek.net = very good; Quinny stroller = not so good

June 19, 2008 by Bill Strong
In order for us to go outside of the house we have to take most of Gwendolyn's machines with us -- bi-pap, suction, pulse ox, oxygen, and sometimes her feeding machine. Most of the machines work on battery but the most important machine, Gwendolyn's bi-pap, does not. So we have to carry a battery...
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A great week

June 02, 2008 by Bill Strong



We had a great week last week with Gwendolyn. Her strength has improved remarkably and Victoria and I feel as if she is stronger than she has been since we left for Stanford over two months ago. She's coming off of her bi-pap (breathing machine) for many hours a day and is completely off of oxygen...
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Queen Gwendolyn's Maiden Voyage

May 07, 2008 by Bill Strong
I'd be lying if I told you Victoria and I weren't on egg shells the whole voyage to the doctor's office yesterday but one very, very important thing I can assure you -- Queen Gwendolyn thoroughly enjoyed being escorted in her shiny cherry red wagon that the Families of SMA Foundation sent us and...
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