Emerson's Scoliosis Journey

They signed her head and we gave her a Mulan bun to help limit how much hair got shaved. New head gear and trying to manage pain.  Em updates: 12:20 We ended up stalled on I70 but finally arrived. Because of her age, she gets an IV before going in and she was not happy about that but they did give her some calming meds.  She is currently waiting to go back, which will be very soon. Surgery will be 4 hours. Halo will go on first then they will remove all of her hardware. 1:15 She has gone back.  2:10 She is sleeping and they are starting. Halo will be first. 4:05 Dr. Luhmann came out to visit. They are doing stitches. They removed everything and didn't find any surprises. She will have a would vac for a week to help her heal faster. They will call us back when she starts waking up.  7:30 She has finally been moved to a room. Having lots of trouble with muscle spasms so they have given her quite a bit of meds. She is very sleepy. She finally woke up enough to do her br...

Surgery #15 is Monday! The reality of that is starting to hit us.     We are busy making plans, organizing the schedules and finishing house projects. We are so grateful that our communities want to help! I do struggle to have an answer for what help is needed but if there is one thing I have learned through Em's journey it is to let others help. God sends help through his people. So here is what we have come up with.  Most importantly, prayers. We are asking for prayers for... Em to stay healthy so the surgery can happen Safety as we travel back and forth to St. Louis frequently For the doctors and staff as they take out the current hardware and attach the halo A quick recovery from that surgery Great correction in halo, which will maximize her final correction  If you have an Em shirt, bracelet or anything green Em would love to see them either before she goes or pictures on surgery day. Last time we hung them in the room to remind her that she has lots of sup...

I know many are waiting to hear how Emerson's appointment went today.  We unfortunately were informed that Dr. Luhmann will not be practicing at Shriners Childrens after the first of the year. Em cried. Dr. Luhmann cried. He has saved her a surgery date of December 7th. That would put the first surgery and halo attachment starting the end of October.  Prayer requests: A solution to whatever seems to be going on at Shriners A healthy fall so halo can start smoothly A successful plan  Results that maximize height, and room for heart and lungs, level out hips and shoulders and minimize pain Our family as we prepare for this treatment 

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 ...