Superhero Day

Brady's feedings were very similar today. He took 12 ml by bottle at 10 p.m. last night and 15 ml at 1 a.m. He slept completely through his 4 a.m. and 7 a.m. feedings. There was a time when Brady was mostly awake during the night, but now it has seemed to switch to the morning. Brady took 64 ml at 10 a.m. and 45 ml at 1 p.m. Ali fed him 70 ml at 4 p.m. His feeding seems to be stagnant at a rate around 40% of his intake by bottle. We'll see if that stays the same through the weekend.
Ali and I have talked a lot about how it feels like we are living a "double life" at the hospital and at home. We have a family of three at the hospital for several hours each day. We get up to the hospital between 10-11 a.m., hold and feed him all day, say a prayer for him, and kiss him goodnight around 5 p.m.

We also have a family of four at home. Ali gets Ava and Casey ready in the morning, drops them off with one set of grandparents, and then we see them again around 6 p.m. We eat a meal together, play with them, read some books, say a prayer, and kiss them goodnight around 8:30 p.m.
I feel bad that I don't think about Ava and Casey as much as I should when I'm with Brady and vice versa. Ali and I keep talking about how weird it is to have a disjointed family like ours. Nothing feels normal.

At the same time, we feel so blessed that our kids are taking everything in stride. Brady keeps fighting and growing. Ava and Casey are enjoying spending more time with their grandparents and cousins. We've created new routines, and our kids seem to be adjusting very well.
Last night we went for a stroll outside with the kids around the block. Ava rode her bike and Casey rode his Hot Wheels. Casey would make Fred Flintstone proud. He doesn't use the pedals at all, he just moves his feet as quickly as he can on the ground below him. It's amazing that he can keep up with Ava on her bike most of the time.
I was walking next to Ava and talking to her about our day (mine at the hospital and hers with grandma). I told her we were proud of how well she was handling being away from her mom and dad so much. She looked at me and said, "That's okay, Dad. I'm just getting some practice for when I go to college and won't be living with you and mom". That's our Ava. She's six going on sixteen.
Today was Superhero Day at Amplatz. They had a number of activities in the lobby for children in the hospital and their families. Patients and hospital staff members were dressed up as Spiderman, Superman and Wonder Woman. Kids were able to make their own masks and capes. Chad Greenway from the Vikings and several Gopher football players were there to sign autographs and play with the kids. Later in the day they had a meal from Chili's Restaurant and cookie decorating. It was amazing to see so many critically ill children with smiles on their faces.

Ava and Casey were at Grandma Rita's house and Brady is unable to leave him room, so Ali and I spent some time getting superhero goodies for our three kids. Brady didn't seem very excited to get his new gear...he just kept sleeping. We put a Spiderman tattoo on his arm, a cape on his back, a mask on his face, and a balloon and certificate in his crib.

I heard about the event a couple of days ago on the radio. They were talking about how these kids in the hospital are able to dress up as their favorite superhero. Many choose the traditional characters, but some patients want to dress up as their biggest hero, their mom or dad. I know if Ali or I had the chance to dress up as our superhero, we'd throw a tube in our nose (fake, of course) and wear a onesie for adults. We'd become our superhero, Brady.

Good night, SuperBrady. We hope you'll use your new cape to fly home soon.

With love,

Tyler, Ali, Ava, Casey and Brady