3 Down, 3 to Go!

It’s been another week here at Levine, and things continue to trend in the right direction toward Dallas’ recovery. A major win is that her six-week post-heart-surgery echocardiogram came back completely clear—the previous clot or thrombus/cast that once appeared in the right atrium is no longer detectable, and the tech took imaging from at least four vantage points. It’s officially gone, and so is the Xarelto she was on because of it!

As functionality returns, we see new things coming “back online” with Dallas. She started using her ASL sign for “toilet” to let us know she needed to be changed, which ultimately progressed to letting us know she needed to go to the bathroom. With that, her occupational therapist facilitated getting us a supported “potty chair” in her bathroom, which she’s now successfully used several times this week—very exciting!

In 2022’s ANE episode, her left arm and hand started working better before her right, and that’s been the case on this journey as well. We’ve seen “righty,” as her occupational therapist calls it, enter the game now. What started as being able to grasp things in both hands has transformed into lots of intentional movements and exploring of her hands and their capabilities. One such event was Dallas really feeling the water splash on her hands in a shower and working it between her fingers. She’s also started touching her face and mouth a lot, and we’ve seen her use the back of her hand to wipe at her eyes. A couple of nights ago, Dallas seemed to have trouble sleeping—she was too busy studying her fingers by moving them around and playing with them. Heather crawled into bed with her, and Dallas held her hand and even held Heather’s face like she used to do—something we used to refer to as her “soft hands” when she’d caress our faces.

The PT/OT sessions have shifted to incorporate more supported standing, especially since the sternal precautions are behind us, and Dallas can now support some of her weight on her arms, such as when leaning over large exercise balls. Levine has an adaptive therapy bike that accommodates the added bulkiness of her supportive braces and various harnesses to keep her strapped in and secure. With both physical and recreational therapists in tow, we ventured outside on the bike and took her for a ride alongside the creek on the greenway trail. They brought bubbles, snacks to throw to the fish, and other things to make the trip more fun and exciting. It was so great to see her on the trail, doing some of the things she’d enjoy at home.

During Friday morning’s speech therapy session, she got to smell and taste some of Mr. Roland’s tomatoes, and the speech therapist said she nearly lunged out of her chair to get to them! When we say this girl loves her ‘matoes, we mean it! The music therapist joined everyone in the “gym” yesterday and led a group session that incorporated singing and playing various instruments she brought, including chimes, shakers, and bells. The group environment of watching others work on their PT/OT/ST helps, but group activities like playing music together really foster a sense of community and bonding among her peers. This may have contributed to some new facial expressions, fuller smiles, and an overall demeanor that she’s starting to show.

We had our family meeting with the full team yesterday afternoon and received updates on her therapy progress from each provider’s notes. It was also an open discussion to address any of our concerns or questions, which we appreciate having the opportunity to do. We discussed her new discharge date of July 10th, a week later than originally anticipated, as the team continues to see Dallas make great strides forward and wants to give her the best recovery kickoff possible. It’s bittersweet to stay longer—we want to get our family home so badly, but we know an extra week in the inpatient environment could make all the difference for a better outcome sooner. We also went over the logistics of transitioning home to ensure we have all follow-up appointments scheduled, resume therapies with our outpatient providers, and discuss the equipment or modifications needed at home to accommodate our needs.  It’s been a great three weeks here, watching her progress so far and we’re excited to see what three more can do for her.

“The greatest healing therapy is friendship and love.” — Hubert H. Humphrey

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