Edda had a regular checkup at CHOP in Philly on Thursday and we made a long weekend out of it. Started on Wed morning when I dropped Elka off at my parents’ house for a house sit. I was there less than 30 seconds when my mom pulled out an entire rotisserie chicken for Elka. Someone was very excited.
On Thursday morning, we drove to CHOP in downtown Philly where it’s always nice to see Eric and his team. Edda’s getting stiffer as she’s getting older, so we’ll try to start her on some muscle relaxant and then stretch her out. She’s has a bad contracture in her right elbow preventing her from flexing it, so we are going to try to keep her other parts loose?
There is a gene therapy that is going to trial this year for Rett and they offered us a spot in the trial, which we turned down. It necessitates being within commuting distance to Philly for about three months, which we theoretically could do, but it also involves drilling a hole in Edda’s head.
After the appointment, which was jolly and fun and very informative, we drove to Katherine and Bob’s house where I got to snuggle with Bunter, my true, anxious love. He’s doing so well! Not so scared of people, most importantly – me.
Jeremy dropped me off at the train in Paoli station near Bob and Katherine’s place and I took it to downtown Philly, then amtrak to downtown DC, then the metro to Rockville and then walked home in time to pickup a ride to a yoga retreat with my friend Kristen. We saw a bunch of familiar faces from last year and enjoyed a quiet weekend. The weather was fabulous, the food delicious.
There was one guy at the yoga retreat which added a nice vibe the the whole thing…as you can see.
