Friday, May 30th

We left UNC Children’s Hospital yesterday through an emotional goodbye celebration of all the available staff on the floor. After being there 61 days, It was a long journey – one filled with lots of ups & downs, more emotions that I’m able to find the words for, and truly taking things one day at a time since March 29th.

We’re thankful for the UNC doctors, nurses, aides, staff, right down to Cedric in the cafeteria, who I actually nominated for PETALS Award (Professional Extraordinaire That Always Lends Support). Cedric is ALWAYS in a good mood, and was the one steadfast thing I could count on to cheer me up with his positivity, words of encouragement, and overall… he’s just a good guy with a very positive vibe – I hope he wins.

We arrived in Charlotte yesterday afternoon at Levine Children’s Hospital, where Dallas will be participating in their Pediatric Inpatient Rehabilitation program—likely for the next 3 to 5 weeks. While here, she’ll receive about three hours each weekday of physical therapy, occupational therapy, and speech therapy. On Saturdays, we can expect around an hour or so, and Sundays are for rest… sounds great!

Most of yesterday was spent getting checked in and acclimated to the new facility: learning the ropes and tackling our first priority… where to eat! Heather and I both missed breakfast and lunch in the hustle and bustle of scrambling out of UNC Children’s with less than two hours’ notice that we were actually leaving. The hospital cafeteria actually had some good stuff, some of which was made to order – a welcomed surprise.

This morning started with Emily from OT. She was great with Dallas—very animated, encouraging, and optimistic. Emily likes using e-stim during therapy and says they’ve had great success incorporating it… we just need to get it cleared with the doctors. We were encouraged to see Dallas moving her head and turning for Emily, with about 25% assistance. One of the best things about therapies here at Levine is that they get Dallas out of her room as much as possible. The OT session took place in a large therapy room with other kiddos also working hard. Being able to see and hear the other kids seemed to really help—Dallas appeared to enjoy it!

Needless to say, the OT session wore her out—like “All done” worn out. Cam from speech came by the room, and we were surprised to learn that she already knew Dallas! She was a grad student at ECU when Dallas was there in 2022 for inpatient rehab during her first episode—such a small world! Cam did some work with chocolate pudding (sounded good to me), but Dallas was completely wiped out and couldn’t participate much. We won’t have speech therapy again until Monday, but we’ll keep working with her on our own in the meantime.

She caught a very quick nap and next up was PT with Matt. He got Dallas into the “stander”—think inversion table, but upright. Once strapped in, it allows her to stand with her body supported so she can bear weight on her legs. It has wheels, so we were able to roll her around, which was great. This was the first time she’s been on her feet since March! We took our new stander (Dallas in tow) downstairs to the Seacrest Studio, where country music artist Braxton Keith was doing a radio interview and played a few songs. It was really cool to be in the hospital’s studio for the musician’s appearance—and they even had a dog in there. Win-win!

After we finished up downstairs, we returned to her room where Dallas melted into her bed—completely exhausted. In contrast—and frankly just how the cards fell with timing, the long holiday weekend, and her G-tube surgery—Dallas had only received maybe 60–90 minutes of therapy in the past seven days. This was a big change, but a good one. The kind of change we’ve been hoping for over the last couple of weeks. We’re still learning the ropes and finding our way around, but we really like it here at Levine. We feel like we’re right where we need to be and are excited to see how things may progress in the coming weeks.

We were fortunate that our referral to the Ronald McDonald House here in Charlotte was accepted and our turn on the waitlist was available starting today. It’s only about a quarter-mile from the hospital, and we’re very grateful to have another place to call our home away from home. With the new accommodations  comes our new address while here:

Ronald McDonald House
Brett & Heather Neville – Room 307
1613 E Morehead Street
Charlotte, NC 28207

“And when you get the choice to sit it out or dance, I hope you dance.”
— “I Hope You Dance” by Lee Ann Womack

« Tuesday, May 27th

Thursday, June 5th »