Three Weeks Home: One Day at a Time

It’s now been three weeks since we left Levine Children’s Hospital and brought Dallas home after a 105-day journey between there and UNC Children’s Hospital. We’re continuing her recovery from her March ANE episode in the comfort of our own home, with the support of local doctors and therapists.

We’re so grateful for everyone who has called, sent cards, hopped aboard the MealTrain, or so graciously sent gifts and helped us acquire the much-needed supplies for her at-home therapies and day-to-day living. I’ve already reached out to many of you and plan to continue doing so to say thank you directly. Speaking of which — who do we owe a thank you to for the blue cube chair and tray? I’d love to send pictures and a proper thank you to that mystery person, as Dallas uses them daily. Please drop me a message!

We saw our first super-sad grimace when Heather had to step out briefly — the first sign of any significant facial expressions from Dallas so far. She also showed lots of frustration around wanting a water bottle: she grabbed it, placed it to her mouth, and began to squeeze and cry out in frustration. She wants so badly to eat and drink — and we want that for her too.

We had a group consult with the feeding clinic today, and Dallas did well with trial runs of sipping water from a straw and enjoying a DumDum lollipop. Seeing this, we’re excited for next week’s first one-on-one consult with a feeding specialist. Our ultimate dream? For Dallas to enjoy Thanksgiving dinner. We believe that with the right team in place, anything is possible.

We also saw her first silly (“Doodle”) face yesterday. She showed it again at today’s feeding team appointment — hands on the sides of her face, head cocked, tongue out — which brought so much joy and laughter to the room. She’s now able to open her mouth wider, paving the way for her to stick her tongue out and begin making other expressions.

We’re really trying to hone in on what motivates her, since therapy can be more like play when we incorporate what she loves. Dallas did great playing with her Christmas keyboard, stood with her AFOs, and was even motivated to stand at the piano and play. She lit up seeing this familiar toy again. We’ve also been working with her on assisted steps, weight-bearing, and fun little activities like stirring a bowl of uncooked pasta.

With some of the first local consults and appointments, Dallas has struggled with the transitions. At first, we wondered if it was just the end of the interaction she was upset about — but more and more, we believe she’s aware of how hard things feel right now. The things she could so easily do back in March just don’t come easily anymore. We encourage her every day, reminding her of her strength, her accomplishments, and of all the people near and far who are cheering her on.

We’re thrilled to be back with our physical therapist — and soon our occupational therapist — who’ve worked with Dallas for the last three years. They truly feel like an extension of our family. They know her deeply, connect with her in ways that short-term hospital teams simply couldn’t. And while the hospital therapists did great work, there’s just something special about working with “your” people at home.

Dallas really wants to stand and walk… A lot. She’ll find a way to scoot herself out of her little living room chair to get down to the floor — where, in her mind, she still believes she can just get up and stroll off. We’ve helped support and assist her in taking steps that simulate walking. The muscle memory is there. And with time, we believe these practice steps will lead to her running around the house again. Like everything else, we’re taking it one day at a time – one step at a time – and know the small victories will add up to something big.

We’re also excited to report that we have some extra help lined up to assist with Dallas’s care at home, starting in the next couple of weeks. It’s going to be a game changer, giving us some breathing room to get things done — knowing she’s in great hands whether we’re in the next room or have to step out.

The road ahead still holds uncertainty, but Dallas is a fighter. With all the love and support surrounding her, we believe things will continue trending in a positive direction. Each day brings more little improvements — and they’re adding up. We’re just so happy to have our girl home.

“Here comes the sun… And I say, it’s all right!” — The Beatles

« Dallas is HOME!