Last Wednesday we packed up the troops and headed to the Moran Eye Center in Salt Lake City. We dropped Beck (3) off at my mom's at 11:10, checked Emma and Nate out of school and headed up. I packed the least nutritious/most fun lunches I could think of. I bought Uncrustables, and packed grapes, carrots, juice boxes, Go-gurts and granola bars. Emma (11), Nathan (8) and Annika (4) were in seventh heaven.
Wendell and I didn't get much of a lunch, me because...I don't know. I was nervous. Nervous we wouldn't be on time, it would be hard to find, we would have to wait for hours before we could even get in, etc.
It was trippy trying to be with three kids all at once there, because they liked to do things simultaneously. I was happy that Wendell had switched days off to be there, but we still couldn't be with all of the kids at once. We ended up with me pairing with Annika and Wendell going with Nate and Emma just had to go alone. The doctor ordered vision screenings from three different cameras on all of the kids.
As Emma as called back, I kept the door open and my ear to the hall for when Annika might get called. I heard a tech say, "Great. I've got a four-year-old who I have to get pictures from three cameras."
I poked my head out and said, "The four-year-old is mine. When you call her back, I'm coming too."
I left Emma with her tech and I went with Annika trying to help her hold still. Nathan had a bunch of extra imagining done, some of which I recommended and some of which I had no idea we were doing.
We got home from the Moran at 8:00pm. Some of it is still a blur. Here are the important points.
* This retinal specialist has never seen anything like my kids' either. She happens to be going to an international pediatric retinal specialist conference this week and asked for permission to present about my kids and see if anyone else has seen anything like it.
*Dr. H is not trigger happy. As long as Annika's and Nathan's eye's are stable, she recommends not treating them.
*She recommends staying with the Avastin treatment for Emma. Except that this is Emma's only seeing eye and, um, the treatment isn't working...so maybe go with the next shot that's $2100.
* At the Moran, they are happier if everything is in-house. So we enrolled in their genetic retinal specialists study because the guy that is flying in, is stingy about sharing.
*Annika was so terrified of having her blood drawn that she threw up when the guy missed and we were considering switching arms.
*At the Moran, invasive tests and treatments can all be done sedated. This is where I'll have Annika treated. Period.
It was a long, long day. And I have a ton of questions still. Hopefully, we'll be able to get them answered as we go along.