Emerson's Scoliosis Journey

Emerson loves her Royals!  Yesterday we used our Blue Crew tickets and enjoyed a family day at the ballpark.  Emerson was so brave and asked Slugger to sign her brace.  For part of the day she left her jersey open, mainly so it wouldn't rub the signature off.  She spent much of that time mad, because "those people are staring at me."  Some people look, sure, it's not something you see on such a young person very often, but no one has ever been mean.  Emerson just doesn't want the attention.  Good news is, that will be over soon.  We are a month away and I am starting to freak out.  It's not something I want to do, but we have no other choice and truly believe it is what is best for her.  So we have started role-playing, letting her be the doctor and work on mom and dad's backs.  Craig has watched a video of the actual surgery and has his questions ready to ask.  I am making every list possible and driving myself a l...

Today we traveled to St. Louis to meet with Dr. Luhmann. Emerson's x-ray is measuring over 90 degrees and he doesn't feel casting or bracing are the best treatment at this time.  This means it is time for her first surgery.  We knew this was coming but now that it is here it kinda hits you hard.   The good news is he doesn't want to fuse anything yet. Instead he wants to give her magec (magnetic) rods. He is concerned about her lungs and ribs at this time.  These rods will allow her to keep growing,  relieve some of the pressure on her lungs and ribs and be less invasive than typical rods.  He is a leading doctor in this procedure and has treated over 50 kids with these rods.  My understanding is they were only approved for use in the US in 2014.  Here is a link to his blog that explains more.  Spinal Growth Blog Her surgery will be October 16. She will stay in the hospital for 2 to 3 nights,  be at home for 2 weeks...

We have decided to do orders for an awareness shirt and a toy drive.  See the order form for more information on the t-shirt.   T-Shirt Front T-Shirt Back Order Form We will also collect toys to donate to Shriner's in St. Louis.  We will collect these until we go back in September.  In our experiences they have used toys for two different situations.  Every kid that enters the hospital (siblings included) gets to pick a small toy out of the the treasure chest before they leave.  These toys are usually small, like small stuffed animals, a pack of cards, a princess wand, or a deck of cards.  After surgery, kids are also given toys.  This seems to usually consist of a book, stuffed animal and a bigger toy.   Thanks for your support and let us know if you have any questions.

We cut the trolls cast off at home and Em enjoyed a nice long shower. We had an 8 o'clock appointment in St. Louis.   We were there about 2 hours making sure the brace was perfect. Then we headed out for a little adventure. At the end of the day Emerson enjoyed her first swim of the summer!   The next appointment will be in September.  Now we just have to keep her in the brace.  Between the sweet little face begging to take it off, the horrible screaming when in her carseat, and the fact that she has learned to take it off herself, we may need some prayers!

Nine casts down.  I am pretty sure we are pros now! We enjoyed some cast off fun. We had an arrival time of 6am and left at 3am.  There were no delays and everything went smoothly.  Emerson really enjoyed this adorable bag that Jeanie made and gave to her.  It kept her busy while we talked to all the people prior to surgery.  We were so proud of Emerson because she is normally scared and hides when her doctor enters the room.  Today she talked to him, told him about catching her first fish, meeting Salvy, and that she was putting Trolls on her cast.  Our routine is that Craig puts on the bunny suit and is allowed to walk her into the surgery room.  She gets what we tell her is a "breathing treatment" (which is really the anesthesia) and takes a little nap while Dr. Luhmann puts her cast on.  She didn't cry AT ALL this time. While waiting for her to wake back up the doctor always comes out and answers our large amount of ques...

I am having a hard time keeping up.  This may be long. Cast #7 Cast #7 coming off Damage from cast #7 - Her first open sore from a cast Bath fun after Cast #7 Cast #8 surgery sent smoothly.  There was some concern that she had a runny nose and was sneezing but no fever, so they continued as planned.  Dr. Kelly applied it and didn’t do any x-rays because he tries to limit the x-ray exposure.  We like that but also feel a little weird not knowing.  Emerson requested mac-n-cheese and fries for lunch.  Apparently, they don’t make KC Royals duck tape but one of Em's teachers, Ms. Whitney made this awesome vinyl cutout for her and we tried to make a powder blue jersey.  Emerson loved it!  Cast #9 will be with Dr. Luhmann (our doctor) on Tuesday.  The two doctors have a little different casting techniques.  In our experience, Dr. Luhmann’s are tighter, get better correction, and are more fash...

Emerson has been in her cast for 2 weeks now and is doing great.  Dr. Luhmann got her in case curve down to 60 from 80 in her brace. He said it was a great start! We are so thankful for all the prayers and kind words.  We are also thankful for my parents who took care of Addison and Jenson and brought us dinner after a very long day. Our dogs were well cared for by Amanda and Em received some great comforting gifts from the hospital.  She was also spoiled at school with gifts and daycare as all her friends wore bibs to make her more comfortable. We are so thankful for our doctors, family, friends, coworkers, church family, teachers and daycare providers.  There truly are amazing people supporting us through this journey!