Monday, April 21st

It was a bit of a restless night last night for both Dallas and PopPop. She just seemed a little more unsettled than the stretch of calmer nights we’ve had recently. We’ve been wondering if the stimulation from Easter — family, celebration, and her first little trip outside — might’ve been a bit too much. It’s such a delicate balance, trying to engage and gently stimulate her throughout the day, without tipping the scale into overload. We’re constantly learning what that balance looks like in real-time.

This morning started early with the PLEX therapy nurses arriving bright and ready to go. Thankfully, everything went smoothly. Dallas tolerated the treatment really well — her vitals stayed consistent and steady through the full session, which gives us some peace of mind heading into the next four PLEX therapy rounds coming up this week and next. The machine itself is a marvel. Honestly, it’s incredible watching it work — filtering her plasma so precisely. Today’s session pulled 779ml (about 27 ounces) over the course of the roughly hour session.

The neuro team stopped by not long after and stayed for a while. They took time to walk us through her most recent MRI, side-by-side with her scan from 2022. Back then, there was significant involvement (inflamation) in her brain stem and both thalami. There’s been a lot of healing over these past three years, which is encouraging to see, but it does look like some of the same areas have been affected again this time. The thalami and brain stem are vital — they relay sensory and motor signals and influence everything from alertness to movement. That connection helps explain some of what we’re seeing in her decreased responsiveness and energy levels.

One thing we’re working hard to reintroduce are familiar routines — little anchors throughout the day that signal when we’re starting fresh in the morning, or winding down toward rest. And part of that routine now includes time outside — something we’ve been longing to do, and now, gratefully, have the go-ahead for. When we asked her if she wanted to go outside, she gave a very clear head nod — small, but definite. And that was all we needed.

Once outside, she was alert and expressive — trying so hard to speak, with lots of lip and mouth movement, and even a few vocal sounds. The sunshine, fresh air, and birdsong… it’s just so good for her. It feels like it wakes up a part of her that’s been quieted in the hospital room’s beeping, sterile hum.

After returning to the room, she was welcomed with clean linens and a CHG bath (part of the infection control process). A little later, respiratory therapy came around with the cough assist, and it turned out to be a very productive session. She seemed more responsive during it — her eyes even teared up a little. As hard as it is to see her struggle, we also take it as a good sign. It shows she’s becoming more expressive, more reactive, more here.

Later in the afternoon, as she was getting ready for her nap, Heather asked if she wanted to snuggle. Dallas gave a yes — with her eyes, a small vocal sound, and a head nod. Three ways to say yes!

We also noticed her eye tracking improving, especially shifting more to the right, which is new (I think) — she’s been mostly centered or favoring the left side up until now.

Not only was she more alert, but very much engaged today. She moved her eyes side to side in response to “are you ok”, as if to say “no”. The only other time she’s done that was yesterday or day before when asked that same question.

These are small steps, but they’re steps – each one matters, and each one adds up. Her shirt today says it all, “Girl You Got This!”

“To plant a garden is to believe in tomorrow.” — Audrey Hepburn

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