Emerson's Scoliosis Journey

 On Tuesday we made the trip to St. Louis to visit Dr. Luhmann.  We have been making many trips that direction lately because he is also treating Addison for her back injury.  Emerson had pictures and x-rays taken first. She has been very interested in the history of x-rays recently because she has been learning about Marie Curie, the inventor of the mobile x-ray. That makes it fun! Then we met with Dr. Luhmann.  He told us that her spine is not allowing the rods to do their job and it has decided to bubble to the side.  This can be stopped with more permanent rods, however her age and size are not good for that.  Once he fuses with permanent rods she would stop growing.  He is still considering whether to wait and do one final fusion or more smaller fusions - she has had one so far. He seemed baffled. He plans to take a closer look at her past x-rays and come up with a plan.   Right now she is feeling good, so we are going to continue with what she is doing and trust that the best pla

Emerson just returned from Higgy-Con, which is a convention for kids with scoliosis.  She spent three days making new friends, playing games, and talking about scoliosis. It was amazing!  We drove 9 hours to get to Kalamazoo, Michigan.  Emerson was a little unsure about what to expect, but once she realized there was lots of green, everyone at her table had scoliosis, and she could win prizes, she was very pleased.  While she spent her time in the kids room, I listened to guest speakers discuss bracing, therapy, medical trauma, types of surgery, pain management, bullying and living with scoliosis. Emerson also got to meet an Olympian rock climber and a famous ballerina who both have back fusions.   Congenital scoliosis, the type that Em has, is so rare and her battles are much different than many scoli warriors but it was nice to connect with a handful of parents that understand and struggle with the same things I do.   Emerson has shared contact information with her new friends and we

 Em is 8 months past her last surgery. Today, along with x-rays and doctor visits with her back and arm doctors she was asked to help out with filming for some tutorial videos. One was planned and the other was last minute. She wrote down some notes and quickly decided what to say with little help.  Her hardware has started to pull away from her spine but that is normal with activity and he encourages activity.  The arm report was that they would like to wait and hopefully do it with a short back surgery.  Filming One of the reasons we love Shriners. Cara joining Em to play. Lots of memories in this room. She had to beat me before we left. She goes back in 6 months.