Friday, June 11, 2021

It's a Pokemon Party, and June is Scoliosis Awareness Month!

Pokemon has taken the kids' world (and therefore our world) by storm!

It's been about six months since my last post.  A lot has happened (most of it good stuff!), but I'll keep this brief.

Recent Adventures:

Savanna and her brother had been doing virtual schooling since August, and they finally got to go back to in-person school in March!  Their teachers and all of the staff did an absolutely AMAZING job at keeping the kids engaged while they were at home.  However, we were all so glad when they were able to go back in person.

First days back to in-person school

Selfie time

In-person violin lesson

First camping trip in the new camper!

Spring Break getaway

New roller skates (safety first!)

Second camping trip in the camper

Neighborhood slip-n-slide

Violin gig at the Garden Tour

Somebody just turned NINE!

June is Scoliosis Awareness Month:

The Infantile Scoliosis Outreach Program (ISOP) has been instrumental in helping to connect doctors to training and families to resources and support.  Please check them out:

Here is a simple infantile scoliosis screening guide for parents and doctors, available at ISOP's website:

Trips to Shriners:

We went to Shriners for Savanna's 6-month check up on May 5, 2021.  The x-ray from this day shows that her curve is holding at 8.61 degrees.  ALMOST totally straight!  You and I might even have small curves like this, and we would never know it.

This is where she started casting in January 2014 at 52 degrees.  (Note that this photo is flipped from the one above.)

She has had amazing improvement and now has the most beautiful spine!  To help maintain the improvement she has had over the last 7 years of treatment, we have decided to continue with night-time only bracing.  She finally outgrew her first night-time (Providence) brace, so it was time to get measured for another one.  Slow and steady continues to win the race!

Here she is on the peg board that is reminiscent of the game Battle Ship.

Or maybe Foosball?  The white pegs and sticks (I'm sure they have better names than that) help the orthotist take measurements and indicate where the "pushes" will be needed in the brace when it's made.

We went back to Shriners in early June to pick up her new brace.  Here's the x-ray with her in it.  It's looking pretty good!

Time to decorate the brace.  More. and. More. Pokemon.

Notice the Pokeball coloring of the straps?

Here's the new brace with the old pink brace.  It's definitely quite a bit bigger.

Savanna has already been wearing the brace for about a week now, and so far, it's feeling good to her!  So, we will stay the course and go back for another check up in 6 months!  Thanks for reading!  Have a great summer!!

Wednesday, November 18, 2020

Keep On Keeping On

It's been about 6 months since our last visit to Shriners, so here we go again!  First, let's recap some of Savanna's adventures over the last 6 months...

Latest Adventures:

Socially-Distanced Fiddling with the Neighbor

Playing in a Creek

Celebrating Savanna's 8th Birthday

Violin Lesson

Trip to the Beach

Showing Blueberry How (Not) to Wear His Mask

Daytripping to the Lake
Visit to Pops'

Remote Schooling Begins!  

(We have since upgraded her to a better desk chair, a painted desk, and a Chromebook from school.)

Hanging Out with the New Pup Moses

Neighborhood Slip n Slide

Have Remote Schooling, Will Travel - One More Quick Beach Trip

New Bike!

Mini-gig with Buncombe Turnpike.  Maybe she'll be brave enough to get up on stage next time!

Halloween!  (A ghost and Mal from The Descendants)

Family Photo Time

New Book to Check Out:

I was very excited to learn about the latest iteration of the Rebel Girls books.  This one in particular features Dr. Min Mehta, who is the surgeon that developed what is now known as "Mehta casting".  

It is because of Dr. Mehta's work that Savanna's doctor at Shriners was able to harness the energy of Savanna's rapidly growing spine to help her grow straight.  Savanna was placed in a series of plaster "Mehta" casts that addressed not only her curve, but also any rotation she had.  This type of casting uses gentle, non-invasive techniques to guide the spine to grow straight.  All in all, Savanna wore 16 casts over the span of 2.5 years, then wore a TLSO (thoracolumbosacral orthosis) brace for 1.5 years (designed similar to the Mehta casts), and finally has now worn a night-time Providence brace for 2.5 years.  We are eternally grateful to Dr. Min Mehta for pioneering this technique and to Heather Montoya of the Infantile Scoliosis Outreach Program (a.k.a ISOP) for bringing Dr. Mehta and her techniques to the US to train our doctors here.  We are also grateful to Savanna's doctor at Shriners!!  It's because of their work that Savanna and countless other children will hopefully be able to avoid or minimize more invasive treatments in the future, such as growing rods and/or spinal fusion.

Here's a recent video with Heather describing ISOP and Dr. Mehta:
(Look for a photo of Savanna's cast collection towards the end of the video!)

Visit to Shriners:

Today was Savanna's 6 month check up.  She's holding steady at 9-10 degrees +/-.  Her curve looks great now!  It's not really much of a "curve" these days!  (Amazing, right?)  Savanna's doctor said that this degree of a curve would not even be considered scoliosis in others.  However, because of her history, we still need to watch it.  

Dr. Pete was over the moon with where she is right now and was really happy with how well she has been growing.  She has grown over 1.5 inches and gained over 4 pounds in the last 6 months.  We will take it!  

The question becomes, keep bracing or stop?  Well, we decided to keep on keeping on with wearing the brace.  As before, it continues to fit her, she doesn't mind it, and it is helping to keep her curve in check.  (I think her dad and I feel worse about her having to wear it than she does, so I try to keep that in mind...)  What's nice is that we can remove it for a few days here and there if we go out of town or camping, etc., and we don't have to worry that she will regress over that short period of time.  She may not even regress over a longer period of time, but I am too afraid to chance it just yet after all the progress that has been made and all she has been through.  So, we go back again in 6 months for another check up.  Maybe all of this coronavirus business will be behind us by then.  We sure do hope so!

Thanks for reading and keeping our superstar in your thoughts!  We hope you have a safe and happy holiday season!