Well peeps, when I stopped updating last year I was really hoping that I'd never have to be on this site again. But here I am. I found out March 2nd 2022, that I have to have surgery up at Gillette Children's Hospital in St. Paul because my baclofen pump has flipped again. This has been so frustrating and stressful. I'm waiting to get the surgery scheduled but this time us going to be more complicated. We're moving my pump to my left side, meaning three incisions and the moving and putting the catheter in my spine in a different spot.  As long as everything goes as planned,  I should not need any long hospital stays and be up and going in a week. I'll be posting more as it becomes clearer on how to best support me and my family. 
Thank you, Kristen.