Emerson's Scoliosis Journey

It's been a minute. Em has been living life and scoliosis has been on the back burner. Her last surgery was September of 2022. Three and a half years is the longest she has ever gone without a surgery and it has been a blessing! We knew the stretch was coming to an end. At her recent appointment, we were told that the big surgery is coming along with another halo stay. The growth guidance Shilla rods are not guiding anymore. Her spine is doing it's own thing and she is in prime time for growth. The trick to success is timing the surgery right at the end of the most growth because after the surgery those parts of the spine will not grow anymore however if too much crooked growth happens, the lungs and heart get squished and the body starts to compensate for the curve. For examples she is having quite a bit of asthma issues due to her lung space right now as well as some leg length discrepancies because of the effects the spine rotation has on her hips.  So it is time. When we go...

 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 w...

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 ...

 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.

Surgery should get easier, but it actually gets harder.  This will be the 17th time she has gone under anesthesia and the 6th actual surgery.     It has hit me that surgery is soon.  It has hit Emerson too.  She is sad, not sad that she has to have a surgery, but sad that she will miss school.  She loves school SO much.   Prior to surgery we use the special surgery soap, start breathing treatments to build her lungs up, make plans for Addison and Jenson, clean all of her bedding and anything that she will be on after surgery to prevent infections, and we pray.  We would appreciate your prayers too.  This surgery will happen on Monday and Dr. Luhmann says it will be an "easy" surgery.  He plans to remove the current rods and replace them with new longer rods as well as tighten all of her screws.  She will stay a night or two in the hospital and then as soon as she is stable and ready she'll be sent to "heal at home."  ...

Em had an appointment yesterday and scheduled a surgery for September 26th (yes, that's his first available date). It will be to replace screws and rods with larger ones. The current screws are "pulling out" and the right rod is still poking out.  This will prevent any skin issues (holes) that the rod and screws could cause. He called it a "reboot" that would elevate the pain she has been having and hopefully hold for two years. No vertebrae extractions needed at  this time and the shoulder is still on hold. We are thankful she gets to enjoy summer and hopeful she won't miss too much school.