Thursday, October 23, 2014


Fiona is trying to decide what to be for Halloween. She was going to be a blue princess, then a green robot, then a blue robot. We'll see.

This has been a crazy week. I had surgery to take out some scar tissue and adhesions. Fiona has been a trooper. We hang out and watch cartoons, take naps and read books.

Her treatments keep getting better. Last week we used 3 sites, and she still did really well. She has a little rash around her nose that I'm keeping an eye on. Other than the rash she's still healthy. At her checkup on Monday the doctor said she looks great. She's growing really well.

Sunday, October 12, 2014

another great treatment

Today's treatment was great. She was watching Dora on the kindle and didn't even notice when I poked her. She was really interested in seeing what the tubes that are left behind after we pull out the needles looked like. She said, "They're soft."

We still don't have all of our results back from Cincinnati yet. Usually we see them all within 2 weeks. I'm going to call this week to get the rest.

Fiona is doing really well. She's not sick, which is a huge blessing. We are isolating again. With the weather turning colder, cold and flu season will be starting. It's been almost a year since she last in the hospital.

We are applying for the Hizentra copay program, which will pay for up to $4,000 of Fiona's treatments. It will be amazing if it works out. That's half of our out of pocket for 2015!