Trilogy 100 Plug Adapter Issue and Cigarette Lighter Adapter Workaround

We had a pretty scary experience with Gwendolyn’s Trilogy 100 bipap while on vacation in San Diego. Gwendolyn has been using the Trilogy for about 9 months now and we absolutely love it. We’ve had no problems with the machine and we haven’t found anything negative about the machine — nothing at all — until […]

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

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 it to countless families — without it, […]

Power Chair — Get the G-Team Van

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 can’t simply go into the wheelchair […]

We Have Ramps!

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 must for […]

Gwendolyn's First Steps

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. Last […]

Warming Up To The Power Chair

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, after […]

KEYT-3 (ABC) Santa Barbara, CA: SMA on "In Focus" special, Sunday, July 26

This morning we taped a segment with Mike Klan of KEYT-3 (ABC) for the “In Focus” special that airs every Sunday evening. The segment will include information on Spinal Muscular Atrophy (SMA), our trip, Sponsor-A-Mile, the Gwendolyn Strong Foundation, and PetitionToCureSMA.com. Thank you Mike for inviting us to contribute to “In Focus” and for helping […]

Possible Solution to the EASyS Stroller Storage Shortfall

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 stroller. […]

We're Home: Trip Recap

We’re home and the old adage is true, there is no place like home (a full size shower feels like such a luxury). But, we are also sad to see this trip come to an end. While we knew this journey was going to be special, it has been more than we could have ever […]

How We Made This Trip Work

We’ve found doing anything outside of our home with Gwendolyn to be challenging. Her machines, the power issues, being outside of our comfort zone, having no night nurse, the change in schedule, exposure to viruses, the added stress, etc. But, we also know how much Gwendolyn enjoys getting out and about, experiencing new things, and […]