Two Weeks at Levine

We’re now two weeks into our inpatient rehabilitation journey with Dallas here at Levine Children’s Hospital in Charlotte. Over that time, we’ve gotten to know the therapists, some of the other families, and many of the incredible kids working alongside Dallas. Every family has their own story and set of circumstances that brought them here, but there’s a strong and unspoken bond in simply being here together. That shared experience forms a community that’s hard to describe, but easy to feel.

The therapists in PT and OT continue to incorporate e-stim (Electrical muscle stimulation) therapy into her sessions, and it’s been incredible to witness. It’s pretty amazing to watch them place the pads on her, fire them in a specific sequence, and then see how her body responds. This past week, we’ve watched her kick a ball, swipe her arm to knock things off a ledge, and maybe most exciting—she pedaled the stationary bike 0.87 miles using her arms/hands. E-stim seems to be a real game changer in helping to “wake things up.” We were so impressed that we went ahead and ordered a portable unit to use with her outside of scheduled therapy time.

We’re also seeing more consistent eye tracking and better stability in her head and neck. For a long time she would keep her gaze off to the left, but lately she’s exploring more, turning her head, and visually tracking her surroundings—especially when there’s high motivation, like the speech therapist waving a DumDum lollipop in front of her. She was locked in on that thing like a heat-seeking missile on that thing! This week also included a beautiful sunny day outside with both PT and Rec Therapy, and we’re all a little better after some time in the fresh air—therapists included.

We’ve also had the joy of spending time with our friends from UNC, just a couple of rooms down. Dallas seems to light up whenever she’s around Zuri and her two sisters. Honestly, she’s loved connecting with anyone and everyone—those walking by in the halls, the friends gathered near the nurses’ station, and other rehab warriors sharing the gym space.

Something new emerged this week too—something we haven’t seen much of until now: emotional responses. While visiting Zuri and her sisters, Heather noticed tears rolling down Dallas’s cheek. She was holding one of the girls at the time, and immediately gave her back so she could scoop Dallas up for a hug. Back in our room, Dallas seemed to indicate she wanted to return to see the girls. We’re not sure if the tears were from sadness—maybe a realization of the gap between what the girls could do and where she is right now—or if they were tears of joy just from feeling included with “the girls”. Either way, it was a tender moment, and something different to see.

We also saw some exciting new communication this week. While sitting in the speech therapist’s lap, the PT asked her to bring Dallas over, and Dallas lifted both of her legs in anticipation of being moved. Another time, she was caught eyeing her feed bag and, when asked if she was hungry, gave a clear “yes” with her eyes. Later today, during a walk to the cafeteria, she started getting a little antsy, and when Heather asked if she was hungry, she nodded “yes.” We saw even more yes/no nods this evening when asking her some questions. These small, intentional responses are such a big deal for her communication. Each one feels like a huge step forward, and it fills us with so much hope and joy.

Today also marks the end of her six-week sternal precautions, which were put in place following her unexpected heart surgery back on May 2nd at UNC. She hasn’t been able to lie on her belly, raise her arms above her shoulders, or bear weight through her arms. Now that those precautions are moving into the rearview, we’re excited for her to try a wider range of movements and exercises. It feels like a door is opening for even more progress in her therapy sessions.

This week, Heather and I also attended a trauma survivor support group here at the hospital. There were a few other parents there, and it reminded us again that we’re not alone. We’re all carrying heavy things, and that shared understanding helps us show up more fully for our kids. Just knowing that others are walking a similar road brings comfort and strength.

Looking ahead, we expect another echocardiogram on Monday, marking six weeks since the blood clot scare and the start of her anticoagulants. We’re hopeful that the test looks good, her bloodwork (specifically the D-Dimer) stays on track, and we can finally stop the Xarelto. That will be one more thing shed, and more importantly, one more step back toward her freedom. Progress remains slow, but it is steady. Dallas continues to push forward and we’ll be right beside her for every bit of it cheering her on!

“Hold on, if you feel like letting go. Hold on, it gets better than you know.” – Good Charlotte, “Hold On”

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