Emerson's Scoliosis Journey

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. 

Last Thursday Emerson went back to school, over the weekend she went back to church, and she is FINALLY sleeping through the night without crying and moaning.  She still complains of her shoulder and her leg hurting periodically, but overall she is happy.   On Tuesday she had her post-op appointment and we were pleased.  We weren't able to see Dr. Luhmann because he was called out to an emergency surgery, but we met with Dr. Kelly and Janet.  We asked if Emerson could use the EOS, lower radiation x-ray machine and they said we could try.  You have to stand really still for it to work and Emerson is now the youngest patient they have had use it at their hospital. Yay for less radiation! I didn't get a picture of Emerson handing out these yummy cookies to all the doctors, nurses, and staff but she was so excited to tell some of them she was doing good and give them a treat.   Dr. Kelly checked the incision and the movem...

On Monday it was 1 week since Emerson's revision surgery (3 weeks since initial surgery) and quite a few things happened! She decided she wanted to go to daycare for part of the day and she had a great time but was very tired. Daddy was on vacation and got to take her. It was time to take the bandage off.  Thank goodness for Amanda and her adhesive remover and treats for afterward. "A scar simply means you were stronger than whatever tried to hurt you." The bump on the top right is the actual rod. Em had her first shower in three weeks! We think the rod is still doing its job.  There is, of course, no way to tell for sure until we get an x-ray, which will happen on December 4th at our follow up appointment.  The bottom is very itchy and we are not allowed to cover it, so we really hope she doesn't mess it up by itching it.  She is weaning herself off the pain medications which means we are actually getting some sleep at night and not having to wa...

We made it to surgery day healthy! After doing a quick celebration for Craig and Jen's birthdays on Sunday night, Craig got Addison and Jenson settled with my parents and we left Sedalia at 2:30.  Emerson was supposed to be on a clear liquid starting at midnight, so we gave her a tylenol then.  She slept for the first hour and a half, only waking up when I hit big bumps (bridges have the worst bumps), but then as the medication started wearing off she was getting really uncomfortable, so I called the 24 hour nurse (she has become my friend) and we gave her another tylenol. I thought Emerson might freak out if she realized she was having another surgery, but it must have been pretty uncomfortable because she didn't.  She was however determined to tell the doctor what part he needed to fix and did show him the specific spot.  Craig took her back to the surgery room and she held the "sleepy breathing treatment"  all by herself.  We were pleased with ...