Skip to main content

Lengthening #2

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 appointment. 

When they lengthen the rod he sets the machine to a number, but it doesn't always get to that number.  Last time he set the machine to 4 mm and it moved 3.5mm.  This time he set it for 4.5mm and it moved 4.2mm.  He did mention that he doesn't want to push the rod too much since we had that issue of it breaking through the bones.  When he lengthens the rod, it puts pressure on her bones and too much pressure could result in the breakthrough problem again.  

He was happy with the results today and we go back in July to lengthen again.  He is still hopeful to get to the 2 year mark which would be the fall of Emerson's kindergarten year.  In our conversation, he talked about some rib anomalies.  We were aware that she had 2 ribs fused together, but are not sure what else that means.  He did say there really isn't anything that can be done for that, we just need to straighten her up to allow the ribcage to have space to expand as she grows. 

This is a picture from when we returned home.  The marking is where her magnet is.  We talked about how cool her back is and that she doesn't have a boring back like the rest of us.   

Sorry that it took me 2 weeks to update.  The trip to St. Louis is always very tiring and along with our normal crazy life Em came down with a stomach bug that lasted SIX days.  

During those 6 days, I was reminded that we are very grateful to not have a cast right now.  You can't just throw a kid that got sick everywhere in the bathtub.  Although I am terrified of slips and falls this summer, Emerson is so excited about the pool, not being hot all the time, and possibly a beach trip. 

We are so very thankful for everyone that has helped us through this journey (I almost have all the thank you cards passed out from the surgery).  We also appreciate the support that Emerson and our family receive on a daily basis.  We see those shirts and bracelets and love hearing about people sharing Emerson's story with others that are starting their own journey.  Someone shared this story about  Tumbo in our support group today and I thought it was fitting.  

Thank you for the continued prayers that the rod stays in place and allows her spine to grow correctly.