I’m feeling pretty demoralized and I’m worried that I won’t be able to figure any of this stuff out. I’m worried about letting everyone down and failing my family

With everything that’s been going on, I don’t think I ever got around to sharing this little tidbit of good news. 🙂

The big concern right now is fluids. He needs to not only in get them but he also needs to keep them down. Obviously, we’re going to have to increase his fluid intake today and with any luck, this will pass without consequence.

Gavin's been asking weird this morning and by weird I mean autonomically unstable. He's been really wobbly and disoriented. I'm not really sure what's going on but I had him…

Gavin was hard at work creating a new Lego masterpiece.

We found a way to make everyone happy. 🙂

The day is off to a really crappy start and Gavin has his IVIG Infusion this morning.

We were at Akron Children’s Hospital all day. We got there around 8:30am and finally got home around 5pm….. It was such a long day, full of anxiety, fear, stress and pure emotional drain.