Sunday, May 18th

Last night was a peaceful one with PopPop here. He and Dallas both got some good rest, and it felt like a much-needed quiet pause. He headed home to Wilmington this morning, and as always, we miss both him and Papa when they have to head home. Their visits bring comfort in ways that are hard to describe, and their absence is always felt when they go.

There isn’t much to report from the morning rounding, other than we will potentially have a g-tube conversation this week, after we see how things are progressing with speech at the week’s end. It’s become sort of the elephant in the room, and frankly something that we’re not really interested in. We’re hopeful that speech therapies this week continue to progress and we can get on a clear path that keeps us out of g-tube territory.

With no scheduled therapies today, it was a slow and sweet one. We watched some of Dallas’s favorite shows, played guitar, and got outside for a while in the courtyard. One of the best things about our new room is the west-facing window that catches the afternoon sun. After her nap, we got Dallas into her chair and sat by that window for a while. We did a little dot marker painting together on a small canvas, soaking in the light and the moment.

Today makes 50 days here at UNC Children’s Hospital – It’s hard to wrap our heads around that sometimes. The days since March 29th have been long and often heavy, but we know we’re not done yet. We’ve always told Dallas “you can do tricky things“, and this is no different. We’ll do this tricky thing together. Most days the calendar feels like it’s been tossed out the window. We’re never quite sure if it’s a Wednesday or a Saturday—they all seem to blur into one another. With the unexpected setback with her central IV catheter and heart procedure now behind us, things have been steady the last several days and we’re grateful for that. The calm stretches are what allow the therapies to do their specific jobs and help her body and brain do the heavy lifting of healing.

Tonight is a girls night for Dallas and Heather, though I heard she was sound asleep before 7pm. Hopefully that means a full night’s rest for both of them. Tomorrow will be full with therapies again, and we’ll take it as it comes.

“Sunshine on my shoulders makes me happy.” – John Denver

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