This trip to Houston was a little different than the last one. At the last one we were nervous and everything turned out as good as could be expected. This time we weren’t nervous and we didn’t feel like it turned out quite as well.
We didn’t get to see her GI doctor since she was stuck in other appointments and we ran out of time and Maggie ran out of patience. We met with the Phys Med doctors who thought she looked great and had no new recommendations for us. In some ways that’s quite an accomplishment. For a long time every doctor we would see would have alaundry list of things for us to do. Now, it’s surprising if they suggest something we’re not already doing.
We also met with her neurologist who is pleased with how she’s doing and while he thinks she’s maybe even a little better than she was, reminds us we are still at significant risk. He reminds us the trials are going well but he can’t really talk about them lest he spoil the research. He mentions a few other potential treatments that are coming down the line. He mentions he’s moving closer to us. All good stuff. But the idea that we’re not out of the woods yet is no fun.
I think a hard part for people to understand is the constant sense of impending tragedy. She’s doing great now – she’s running and jumping. She’s swimming like a champion. Not a champion of swimming, mind you – she doesn’t float and hasn’t quite figured out you’re not supposed to drink the water – but she’s making great strides. She’s gaining wait and muscle. She’s getting stronger. She’s even vocalizing more now. She knows her abcs and 123s. She can’t pronounce all the letters and numbers. But she knows them. It’s obvious.
But at any minute something could change. She could get pneumonia and forget how to walk while she’s laid up. She could get a seizure and forget how to hold things. That’s Rett’s dirty secret – we constantly have to be on the ready. That’s ok, Rett. I’m ready. En Garde.