Emerson's Scoliosis Journey

In an unfortunate turn of events, we were just told it is unsafe to put Em under anesthesia today and she won't be having surgery. More details... I don't even know where to begin.  The past few days have been quite the emotional rollercoaster.  We have been wrapped in love by our family,  friends,  teachers,  coworkers,  and church family and are so thankful for all of the support for Emerson and our family.  Over the weekend Emerson had developed a very minor cough.  She was blessed with allergies like her momma and normally gets a little runny nose from time to time.  We can usually control it with the breathing machine treatments and it isn't a big deal.  We have had castings with this cough and it not been a big deal however for castings she was only under for about an hour. When they called yesterday for the preop information I told them she had a mild cough and if it got worse I could let them know.  There was no more di...

Emerson will only wear a brace for 2 more days. As we try to prepare for this week I wanted to thank everyone that ordered shirts.  I almost have them all delivered! We have ordered over 150 and will put another order in later. We would LOVE for anyone that has one to wear it this week.  Tomorrow would be the first opportunity.  At 6 o'clock there will be a private prayer service for Em at our church.  The elders will be praying over her and we would love to see anyone that wishes wearing her shirt or wearing green in support throughout the day.  The other day is surgery day,  which is Tuesday.  We are hoping the shirts will remind everyone to say some prayers.  We would also like to thank everyone that has helped us prepare for Tuesday with gifts, words of encouragement, prayers and help. We definitely feel the love!

Our appointment was at 7, so we tried staying at Haven House.  If we would have arrived before 3:30 a.m. this may have been a little better. Preop consisted of xrays, photographs,  pulmonary exercises, blood work, and urine analysis. We agreed to have Em be part of the national research on Magec rods. She survived the blood work and was rewarded with a babydoll and jewelry. We are only getting 1 rod because in our doctors experience the other side rod usually breaks and punctures.  One rod is more effective. He is going to attempt the larger rod,  which would last longer,  but may only get the small rod in. Only one of us can stay the night with her. We can't give blood because they don't do that,  however they doubt she will need it. They will start walking her the day after surgery to hopefully avoid muscle spasms. The biggest complication is infection. We are exhausted. Surgery is in 2 weeks. Pray. Pray. Pray.

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!