Emerson's Scoliosis Journey

I am behind.  October 1st we went to Shriners for Emerson's 4th lengthening.  They were able to move her rod 5mm.  That means it has moved a total of 16.8mm leaving 11.2 left (this makes me nervous).  Her EOS x-rays were good.  He thinks her top hook has come loose but isn't too concerned about it.  We head back in January for our next lengthening.  Her size seems to be a bit a of a concern and she was ordered to keep eating her meat and veggies, but also ice cream every night.  I wish I had a picture of the smile she had when hearing that! Overall, she is doing good.  We are concerned about the mobility of her left arm because it seems to be getting more limited.  Sleeping has improved, she is loving school this year and looking forward to participating in some basketball this winter.  We are also pleased with the improvement we have seen with her lungs and asthma and really hope that continues.  We were so thankful to get...

Short Version Emerson has had a hard time sleeping recently.  She also fell off the seat of a picnic table and hurt her back so we have been concerned that something wasn't right.  The x rays showed that everything was fine and Dr. Luhmann lengthened her rod another 4.1 mm.  She is doing great! Long Version Since May Emerson wakes up in the middle of the night screaming.  She tosses and turns and grabs at her back most nights.  This happens at least 3 times a night and is heartbreaking.  We have been very concerned about it but during the day she seems fine.   Last weekend, Emerson was sitting on a metal picnic table and somehow slipped and her back slid down the seat as she fell to the ground.  Since the rod and screws are right under her skin, this hurt pretty bad and left some nasty bruises.  We were concerned that the fall may have hurt something on her rod or the bruises would prevent the lengthening.   Emerson h...

Emerson is almost 6 months past her first back surgery.  She enjoys baths, playing in rocks and dirt, jumping in puddles, drinking out of plastic bottles, wearing cute dresses, and real hugs, all things that are okay in her new lifestyle.  She misses trampolines, bounce houses, and being able to sleep anywhere.  Big sister Addison decided to collect toys for the kids at Shriner's Hospital instead of receiving birthday gifts this year, so she delivered those at Emerson's appointment.  She had alot! Emerson wanted to wear her doctor gear to show Dr. Luhmann that she had done back surgery on her bear, which is a Scentsy buddy that unzipped in the back.  Later the hospital photographer came and took her picture with Dr. Luhmann and we are supposed to get a copy of that soon.  Emerson's pre and post-x-ray looked good, meaning the rod, screws, and hooks were all still in place.  They were excited that she had grown a little bit since her last app...

We were a little worried about how Em would react to the lengthening so last night,  I showed her this video .  We talked about how it would be loud,  but wouldn't hurt her.  She didn't sleep well.  I think I made her anxious. When we arrived she had a prelengthening x-ray to make sure everything was in place,  then they lengthen, then x-ray again. We thought she was going to cry but she was very brave and afterwards she was skipping down the hallway to the x-ray room. All of her x-rays looked good. They lengthened it 4mm and we go back in April for the next one.  Today we are so thankful for these magec rods and for the low dose x-ray machine. We just pray things continue to stay in place and she gets the full 27mm (about 2 years) out of these rods before needing new ones.  Thank you for your continued support!

I can't believe it's here already! Tomorrow we head to the doctor so Miss Emerson can have her first lengthening.  We are told it won't hurt,  but will feel weird and she may be sore while her body adjusts to growing. She will also have xrays done to make sure everything is still in its correct place.  We would appreciate prayers for safe travels,  a good xray,  easy lengthening and no muscle spasms afterwards.  As always,  thank you for supporting our princess.