Today was a rest day—no medications—and Skylar’s energy came back in full force! She was buzzing with excitement and joy, a welcome sight after so many tough days. We even had a wonderful volunteer come in to play with her, which gave me a rare chance to catch up on some work.
I can’t say enough about how grateful I am for the incredible nurses and volunteers here. They’ve been a true godsend. Lately, they’ve even taken over Skylar’s tube feedings, managing them in the early morning hours and again late at night. Not having to run those long continuous feeds myself has felt like such a luxury—dare I say, I’m feeling a little spoiled!
It’s amazing how even small breaks can make such a big difference.
