Today (Monday, Feb 26th) unfolded under a sky mirroring our current journey - mostly overcast with fleeting moments of light. The morning began with our usual routine: breakfast and heartfelt goodbyes to Papa. In an effort to bring our support circle closer, we've managed to secure a hotel room right next to ours for Nana, a small win in our ongoing battle for normalcy.

This morning's regimen of medications was lighter, a precursor to Owen's first clinic visit since his discharge. The weight of the upcoming appointment prompted a much-needed nap for Mom and Owen, a brief respite for both. Meanwhile, Dad wrestled with the challenge of balancing his video post-production business amidst this tumultuous period.

For Dad, being idle isn't just unproductive—it feels like neglecting a foundational crack in our lives. Yet, his unwavering support and calming presence are invaluable, especially during Owen's moments of anxiety. We're hopeful that once we settle into the Ronald McDonald House, with a dedicated workstation, Dad can find a semblance of productivity again.

Our approval to move into Ronald McDonald House tomorrow offers a glimmer of hope, though the reality of room changes reminds us of the impermanence of our situation.

Today's clinic appointment was a mixed bag—frustration with repetitive hospital protocols but relief in finding a more palatable way for Owen to take his medications, thanks to a helpful pharmacist and cherry syrup. The brief interaction with our attending doctor, after two weeks of heresay communication, highlighted the inefficiencies of hospital hierarchies.

The day's challenges didn't end there, with a prolonged wait for Owen's pain medication extending our return to the hotel. Yet, the evening brought a simple joy—pizza and ice-cream along with the invaluable company of each other. Owen's acceptance of his newly flavored medication marked a small victory in our daily battles.

As night fell, Owen's spirits lifted, filling our hotel room with giggles. Seeing his smile pierce through the day's gloom gave us parents a little boost of energy when our fuel gauge was hitting empty.

— Owen’s Parents