Day 118

I started out with the intention of updating this blog every single day, but good intentions don't always lead to action. I don't have a lot to report anyway, so nobody missed much. We spent the rest of the week running various tests, trying to cover all of our bases before scheduling a surgery. Holden was so excited when we headed out of the room each time, probably wondering what treat we had in store for him, only to be strapped down in every machine the hospital has to offer. It couldn't have been a fun week for him, but of course he was amazing through all of it... He always is. To say this kid is a trooper would be the understatement of the year.

None of the tests we've run have shown anything yet. Again, we didn't really expect them to, but there was always the little hope that we'd find something obvious and easily fixable. Of course, there are never easy answers with my little Riddler, and I need to remember that! The last test we'll run is on Monday, and that one won't be over until Tuesday morning. Once we have the results back from that, we'll schedule his surgery and start praying.

He pulled his feeding tube out last night (again), so we decided to leave it out for 24 hours to see how he does without it. The good news is he's not throwing up... The bad news is that he doesn't (can't?) eat enough to keep the tube from going back in. I dread putting that wretched tube back down his nose and throat, but I know he can't survive without it. The tube is yet another thing I have a love/hate relationship with in here.

He's been through much worse, and will likely face down bigger and badder demons again. It almost seems silly to worry about a stupid little tube. But worry is what I do. I've gotten really good at it. I have to catch myself sometimes before the worry turns into a full blown panic attack. Nothing comes easily for him in here, and I want to do any small thing I can to make his life just a little bit better.

But you know, Holden's not really worried about the quality of his life... He wakes up ready to live each morning, like he knows what a gift it is. This is all he knows, and he wakes up with a smile for the world every single day. There is no substitute for genuine love and happiness in life's toughest moments. We adults forget that sometimes, but Holden is already wiser than most. The kid is pure joy. So today I'm enjoying my bare-cheeked boy, stealing all the kisses I can before those perfect cheeks are hidden again behind tubes and tape.

We watch. We wait. We hope for the best. And we pray.