Today was not the easiest day. It’s hard to watch someone you love fight this hard for this long without feeling a little worn down by the battle. But even through the fog, hope is standing its ground.

Jake navigated the swallow study, and while the road to eating real food has its own set of complications, we are choosing to see the progress. He is closer today than he was last week. He did have some aspirations into his lungs during the study that did not help his respiratory situation. They found that his muscles are still weak and his left vocal cord is not moving as much as it should. We will continue to work with Speech and ENT to strengthen and correct these issues.

His lungs continue to be in a constant tug of war between steps forward and steps back. There are hours where he breathes freely on the nasal cannula and we can almost see the finish line, followed by moments where the high flow and CPAP are necessary to keep his lungs open and happy. It’s a constant seesaw, but he hasn’t stopped fighting.

Despite all the frustration, Jake’s determination is the most hopeful thing in this room. He is not quitting. And while the pace may be much slower than we had planned, we are encouraged by the person Jake is proving to be every day. His new, beautiful heart and liver are matched by a spirit that simply won’t back down.

We are leaning on your prayers. We know the goodness of the Lord is present in this room, even in the hard moments.

But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me.

Micah 7:7