Amaya's Journey with PFFD: I've lost track

I've lost track of the days and how long its been since surgery. I have to look at a calendar to confirm. With the calendar I can tell her surgery was Tuesday the 25th and today is Sunday the 30th. So we're going on day five. I believe she was released on Thursday afternoon. She had made so much progress that second day that her orthopedic, anesthesiologist, and physical therapist all agreed she could go home. Like the orthopedic resident said "medically there's nothing wrong with you." He said the biggest thing would be to get her pain managed and moving safely. The epidural was removed early Thursday morning and within an hour her legs were starting to "wake up" and her strength was returning to her right leg. She was able to move to the edge of the bed, stand, walk (she walked fifty feet on her first attempt!), and sit back down safely. She continued to practice throughout the day as well as bending her left knee (she could barely do it without having excruciating pain but its important to have it move so she doesn't lose her range of motion in her knee). Her anesthesiologist was impressed with how healthy she looked and how well she was managing her pain. I think it helped her to hear from the orthopedic resident that, "The pain won't be fully removed like it was with your epidural. I want you to have a realistic expectation of what your pain will be. You will continue to have it, but it's about managing it and having it be tolerable." That may not be a direct quote, but it's the gist of what he said. Since her pain was managed, her strength regaining and she was asking to be released (the interrupted sleep was wearing her out!) I felt good to leave.

The forty-five minute drive to Paco's (Amaya's grandfather) house was pretty painful for Amaya. She said she could feel each bump on the road in her leg. It was sad to hear her moan and yell out in pain. Her first night went pretty well. She woke up a couple times but those times aligned closely with the time for pain meds so that limited her interruptions. We've been massaging her feet, and head which have helped her a lot. The first night she slept for five hours straight, so did I. It was amazing! She was so happy to not have to be woken up for vital checks or by the crying baby in the room next door.

The past two days she has improved immensely! Her right leg is stronger, her pain is managed, she's been able to sleep for longer stretches and her mood is holding up! She's pretty steady as she moves and stands but there have been a couple items when she's lost her balance and fallen over. We are always close to her and were there to catch her each time. Josh drove home yesterday and safely made it home to be with Lidie. He returns to work Monday. Amaya has a follow-up appointment Tuesday and will begin lengthening then. Her appointment was scheduled with another orthopedic doctor but Dr. Nelson said he'd make sure to see her. He was so happy with her progress and wanted to make sure to check in with her to see how she was improving and review the next part of her lengthening journey. Then Wednesday we'll fly home.

Last night was rough, Amaya woke up with intense pain after midnight and a deep longing to be home in her own bed and room. It was a reminder that we still have a long, rough road ahead of us. This morning she's been FaceTiming with her sister and cat, that's been a huge help!

Here's some photos from the last couple of days...