Three Days at Mayo Clinic: A Journey of Care and Finding Solutions

Abe and I just spent three days at the Mayo Clinic for his complex care, which is always a bittersweet experience. It’s a time for us to meet with various specialists and discuss everything related to Abram’s rare disorder, UBE2A Deficiency Syndrome. As challenging as the appointments are—full of poking, prodding, and bloodwork—Abe always manages to end each one with either a hug or a fist bump, his way of saying, “I did it.” It’s those little moments that remind me how strong he is.
To make it more enjoyable for him, I always try to book us into a hotel with a pool, his absolute favorite activity. After all, what’s a trip to Mayo without a little fun mixed in?
During this visit, we met with the complex care team leads and scheduled appointments for our next trip in December. One of the biggest topics of discussion was Abram’s foot deformities. We talked a lot about the custom boots we got at home, which turned out to be a disappointment. They’re heavy, knee-high boots that make it nearly impossible for him to walk. Everyone agreed that he needs shoes, not these bulky boots, and I’ll need to circle back with Hammer to fix that along with addressing some wheelchair concerns.
While at the hotel, we happened to park next to a man with a unique shoe and brace combo that I had never seen before. His orthotist had customized off-the-shelf shoes to fit his needs, and he was kind enough to let me examine them right there in the parking lot. I found a pair online that might work for Abram! They come in a triple or quadruple width with added depth for custom insoles, which could be just what he needs.

But let’s not forget Abram’s favorite part of the trip—riding in the trolley to the hospital! That little trolley ride is a big deal for him, and it’s always a highlight of the visit. It’s a fun and exciting moment for him, and it helps make the whole experience feel a little more special. He gets lifted up on the ramp in his chair and strapped down at the back of the vehicle giving him a bird's eye view of all its occupants.

I’m posting this here to remind myself about these shoes and the potential solution for Abe’s foot issues. It’s always great when a random encounter leads to something helpful, and I’m hopeful this will be the right fit.

Here’s to finding the right solutions, one step at a time!