Big Accomplishments, Bigger Goals and a Fun Celebration!

Dallas has worked her tail off the last three weeks in an intensive therapy stay in Charlotte at NAPA Center. 

If you’re not familiar, NAPA (Neurological and Physical Abilitation) is a therapy center focused on intensive, individualized programs for kids with neurological conditions. Dallas spent four hours a day there… for three weeks! Physical therapy, Occupational therapy, and Speech therapy… Back-to-back-to-back! 

The therapists didn’t just “work with” Dallas… they learned her. Quickly. What made her light up. What made her shut down. When to push. When to pause. They found ways to ask more from her without overwhelming her, and that balance is not easy. One of the biggest things that stood out was the equipment and techniques. It’s hard not to notice that what they’re doing there feels YEARS ahead of what we have access to at home. Not just the tools themselves, but how they’re used and how intentional everything feels. The idea is to create repetitive exercises to promote neuroplasticity in the brain. 

With the help of bungees supporting her weight, the “SpiderCage” allowed Dallas to stand more upright, almost like that feeling of being in water. Add in a walking pad (small treadmill), and it became a powerful tool for gait training. By the end of the three weeks, we saw a noticeable difference – less leg locking, less “scissoring,” and more control in her steps. This daily repetition was even noticeable when we saw her legs moving in a walking pattern after she had fallen asleep. It was as if her brain was still practicing and trying to figure out how to make it all “stick”.

Then there was Galileo! A specialized vibration platform, nicknamed “Shaky”, Galileo uses a side-to-side motion at set frequencies to mimic natural walking patterns. What we saw was remarkable… less stiffness and less tone! Not only did it provide more physical comfort, but also more freedom in her everyday movement. And it didn’t take long sessions either. Even short periods of about 10 minutes/day made an impactful and very visible difference. We were amazed at the noticeable change that happened so quickly. 

Dallas’ favorite part of the day was when it was time to get on the adaptive bike. Disguised as fun, the goal of the bike is to build strength, improve coordination, and encourage reciprocal leg motion, all while promoting independence and confidence. She enjoyed it so much the therapists began to use it as a reward to get through the other work. With small breaks outside on the bike, she got to experience something that feels normal—simply being a kid. Due to the excess tone and stiffness in her legs, Dallas had never learned to ride a bike despite many attempts. Each year she would grow out of her current bike without having put any mileage on them, ultimately growing a collection in the garage. That’s why seeing her on the bike at NAPA was SUPER special. Although she isn’t able to show us much of a smile yet, she certainly expressed her dissatisfaction when it was time to put the bike away for the day!

The work was strenuous and exhausting, but Dallas never quit! As hard as it was to push through those exercises, we believe she did enjoy the feeling of being on her feet and getting her body moving in a way it hadn’t in quite a while. We know that one of her biggest desires is to walk again.

And then, a curve ball…

Last Friday was supposed to be her graduation day from the program at NAPA Center. Instead, she woke up to a high fever and vomiting. After a few hours without being able to break the fever or keep food down, we followed her sick plan protocol and headed to UNC Children’s Hospital for evaluation. This was our first time putting that plan into action, and we’re incredibly grateful to the medical team who helped us prepare for moments like this. She was quickly admitted, expedited through the ER and started on IV fluids, high-dose steroids, and underwent testing, including an MRI.

We’re thankful to share that her fever broke late that night, testing pointed to a virus & infection, and she showed no neurological changes throughout. After a few days of care, with her vitals and cognition remaining strong, the team felt confident discharging her home, where she feeling much better. We’re beyond grateful for the team at UNC Children’s Hospital, the nurses, support staff, and the Ronald McDonald Houses in both Charlotte and Chapel Hill for always taking such great care of our family.

Dallas’ 6th birthday is around the corner. And with all that she’s been through, all that she’s accomplished and that she hopes for…we’re planning something a little different this year!  

As we look ahead, there are still a lot of important pieces we’d love to continue investing in—another intensive program later in the year, and specialized equipment at home that can help her keep building strength and independence (many of which aren’t covered by insurance). One of the biggest goals we have right now is an adaptive bike—something that would give her the support she needs to safely ride and experience the simple joy every kid deserves (AND all the therapy benefits that goes along with it).

So this year, in place of traditional birthday gifts, we’re inviting contributions that support Dallas’ goals and her continued progress. Milly’s Ice Cream will be hosting a fundraiser/birthday gathering to celebrate her on May 16th. Come by, grab your favorite ice cream, and spend a little time together. A portion of the day’s sales will directly go toward supporting Dallas. We’ll also have a raffle and a few simple ways to give if you’d like to be part of it. 

Whether you stop by, contribute online, share the word, or simply keep Dallas in your thoughts and prayers, we’re so grateful for this community and the way you continue to show up for our family.

If you’d like to be part of Dallas’ birthday in this way, you can support her here:

• Venmo: @HeatherNevilleILM
• Zelle: Send using phone number 910-398-1201 through your banking app.

“Hey! I’m not giving up today… There’s nothing getting in my way… And if you knock knock me over… I will get back up again, oh… If something goes a little wrong… Well you can go ahead and bring it on… ‘Cause if you knock knock me over, I will get back up again.” –Get Back Up Again by Anna Kendrick from the movie Trolls

Check out her highlights from NAPA Center Charlotte in the video below!

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