Wednesday, April 16th

Another peaceful night with PopPop, and we’re thankful for these last couple of stretches of rest she’s getting.

This morning, a small spark of something new: when Heather scooped her up, Dallas lifted her head just a touch. Tiny, yes… but real. Her feet and fingers wiggled too—without stimulation—just little moves all her own. PT/OT stopped by, and while she was still super sleepy, they caught more of those same movements.

Neuro team update: Dr. Dujmovic mentioned that if things continue at a slower pace, it might be time to consider PLEX (“plasma exchange”), also known as plasmapheresis. It’s a more intensive treatment—requiring a central line, which does add some risk—but it could help by removing immune proteins that may still be causing inflammation. It would be five sessions, every other day, with weekends off. If we were to start tomorrow or Friday, she’d likely finish before her next IVIG and Tocilizumab doses are due. Dr. Dujmovic, via the team, also suggested continuing Tocilizumab through mid-June, every two weeks.

Today she was so sleepy. Deep, unreachable sleep for most of the morning and into early afternoon. But when Papa arrived? Eyes wide, alert, and bright. She stayed up for hours—longer than we’ve seen in the past few days. We even played a game of Go Fish, and Dallas (with Heather playing her hand) won! We’re so grateful for the extra helping hands—from everyone who has come by to support us. It gives Heather and me a chance to step away for a bit, take care of ourselves, and take care of each other.

Because Dallas had a couple of extra-sleepy days in a row, the team ran a quick viral panel—came back clear. Her urine sample, though, showed signs of bacteria, so it looks like a mild UTI, which could help explain her slowed-down pace. Later in the afternoon, we got Dallas on her belly—she looked peaceful, maybe even relaxed and comfortable, if only for a bit.

We’ll keep holding onto these flickers… these “big little wins“. Every head lift, every foot wiggle, every Go Fish victory—she’s a fighter!

“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” — Elizabeth Edwards

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Thursday, April 17th »