Evelyn had another really good day today.
She left her room for therapy, walked around the unit, and only needed a few short breaks in her wheelchair. Watching her strength slowly return has been incredible.
One of my favorite moments was when we played hide-and-seek. She hid behind a pile of blankets, and the nurses and therapists were sweet enough to play along. Finding her sitting there with a blanket over her head, giggling while trying to hide from me, was one of those moments I’ll never forget. For a little while, she wasn’t a heart failure patient or a transplant candidate, she was just a six-year-old kid having fun.
We also received exciting news today: Evelyn’s Berlin Heart pump is scheduled to arrive on Friday, we were initially told 14 weeks.
Right now, Evelyn has Berlin cannulas connected to an LVAD system that provides continuous blood flow. The Berlin Heart works differently by creating a pulsatile flow, which means it pumps more like a natural heartbeat. This can help reduce clot risk and may be beneficial as she continues toward transplant. Another big difference is that she will have a pulse again.
The switch can be done at the bedside, which is wonderful news.
There are some tradeoffs. The Berlin Heart’s battery only lasts about 30 minutes when unplugged, so we’ll need to stay connected to power wherever we go. But it also brings more freedom in other ways. Once she’s on the Berlin system, she won’t need a perfusionist or ECMO specialist every time she wants to move around. Instead, it can be as simple as Mom and a nurse helping her get up and explore.
Today was full of laughter, milestones, and hope. We are so grateful for the incredible nurses, therapists, and medical team who continue to cheer Evelyn on every step of the way.
One day at a time. 
How You Can Help
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What makes our partnership with COTA so great is that they will be with Evelyn throughout her lifetime. Every dollar donated to COTA in honor of Evelyn goes to transplant-related expenses. Thank you for being here with us for Evelyn.