Emerson's Scoliosis Journey

Craig hung out with Em for a couple days.  It's pretty quiet on the weekends.  No therapy.  They filled their time with movies, videogames, and crafts.  Monday her bandage on her back was removed.  That's very painful on her sensitive skin so we are glad it's over with.  Craig said it took an hour.  Their is a section of gauze that got stuck to the glue on her incision.  It should come off eventually.  She had her first shower yesterday.  Pin care is going much better.  She is enjoying her cards and gifts!  Thank you! My view She loves her cards! Bingo!

It's been a busy couple days!  Now that she is off pain meds and comfortable the goals are to get stronger, taller and gain some weight.  She has occupational therapy twice a week and physical therapy twice a day, plus breathing exercises 4 times a day.  They also have a recreational room with tons of activities to keep the kids busy.   She is sleeping much better.  Her weight is 9 pounds so far.  We get a pound more every day.   She has received some cards and fun packages and gets so excited!  

Em had a better day today.  She got her walker, which she loves!  She walked on the treadmill for 15 minutes in the morning and 20 in the afternoon.  Her weight is 7 pounds.  There is another young girl here in a halo and they are enjoying each other’s company.   Her only struggles at this point are missing her sisters and cleaning the pin sites.  They have to be cleaned daily and it stings.  It’s terrible.  

Emerson had a rough night and morning.  She is out of traction to eat lunch and says she feels much better.  Visitors are still not allowed but if anyone would like to send her a card her address is Emerson Poe - Inpatient Shriner's Hospital 4400 Clayton Ave. St. Louis, MO 63110 💚

Surgery went well today.  They attached her halo and removed her Magec rod.  She is struggling with nausea and has been given more meds to help. We appreciate all the support!

There were some scheduling issues and Emerson's first surgery is now June 22. 

Emerson's upcoming plan is: July 13th:   Surgery to remove the Magec rods and attach the Halo Traction. She will stay in the hospital for 6 weeks while the Halo Traction is attached. August 24th:  Surgery to remove the Halo Traction, one vertebrae removal and fusion, and Shilla rods inserted. She will stay for about 4 days after this surgery. If the hook on the bottom of her rod migrates all the way through, the plan will be the same, but it would happen immediately.  There is no way to tell when that will happen.  All we know is that is has moved more. We started the week with a virtual meeting.  Dr. Luhmann knew I would have questions 🙂  I had read his blog posted about both procedures multiple times, had joined a new halo Facebook support group and spent hours reading about others' experiences with these procedures.  Thank goodness for support groups! Her magec rod is maxed out.  He could try to lengthen it one more time in Augu...