Spinal Muscular Atrophy Power and Backup Power

In our experience, power and backup power for Gwendolyn’s various life-critical machines can be — well — a pain in the neck and, when we haven’t been prepared, extremely stressful and dangerous. We feel like we’ve encountered (or stumbled through) just about every power issue and emergency you can imagine over the past several years […]

Spinal Muscular Atrophy Machines and Supplies

In our personal experience, getting your arms around life-critical machines and supplies can be daunting in the process of dealing with a spinal muscular atrophy diagnosis. What will we need? Where will get all this stuff? What do others use? How are we going to figure all of this out? We remember these questions quite […]

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 […]

Great News

Good news — GREAT news! Gwendolyn’s appointment today went really well. All things considered, Dr. Yuan is actually really pleased with how Gwendolyn looks and sounds. Her labs came back excellent. Her x-ray was fabulous. And overall she is in tip-top shape. WHEW! We talked to Dr. Yuan for hours and basically what it seems […]

Some Worry

We are worried. We have been for a month now, but we keep hoping we will see improvement. We keep hoping we aren’t seeing what we are seeing. Gwendolyn just isn’t herself. She isn’t sick. She wants to do and go and see, but her energy is low. She is not coming off bipap for […]

Trilogy Transition Going Well

Gwendolyn is a champ! She is transitioning to the Trilogy with ease and, thanks to the help of so many people, the last few days have been positive ones. The reality that her settings are now so high that she is even more vulnerable weighs heavily on us, but the kindness of others helps to […]

Heading To Stanford For Trilogy 100

We’d be lying if we said everything is A-ok in the Strong household. It is not. And while we know we are in a very precarious situation with Gwendolyn, we are hopeful. We have a plan. Team Gwendolyn is in full force! Gwendolyn had another episode last week. She didn’t completely stop breathing, but she […]

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 […]

Gwendolyn Update

It has been a busy few days. We are home from Stanford now and are continuing to try to figure out what is going on with Gwendolyn. We are still a bit worried, but are relieved to be tackling the issues. She is doing fine on the antibiotic, but we are watching her closely to […]

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. […]