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) https://www.abilityconnectioncolorado.org/infantilescoliosis/ 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:

https://www.facebook.com/1631921358/videos/pcb.10220580793263092/10220580770022511/

(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!

The Most Beautiful X-Ray

As you might be able to tell from the name of this post, I have even more good news to share!  I will get to that in a moment, but first let's do a quick recap of some of Savanna's recent adventures.  I have only included a sampling of them here.

Once the coronavirus made its way to the United States, and schools were closed mid-March, we had to get creative about our "at home learning."  It has been a challenge for sure, with 2 adults and 2 kids at home ALL day nearly EVERY day, but we have been doing okay.  Some days are beautiful, and some days are train wrecks.  There's too much screen time, but there's also ample time for getting enough sleep (adults too!) and playing outside.  The days feel really long sometimes, but then I turn around and it's dinner time already, as the time ended up passing quickly.  It's a mixed bag, but the kids have been doing amazing.  At the end of the day, we are all worn out; but we are also healthy, well fed, warm, and loved.

We hope that you and your family are also staying healthy, well fed, warm, and loved!

Recent Adventures (Quarantine Edition):

Blowing Sock Bubbles

Sidewalk Chalk Stencils

Mother's Day Bike Ride on the Closed (to cars) Blue Ridge Parkway

We went through five tunnels!

Our Backyard Resort

Splashing in Puddles

Also, Savanna taught herself how to play "Baby Shark"!  (Warning: this song is an earworm!)

Trip to Shriners on May 21, 2020:

This was a quick trip to Shriners.  Usually we try to meet up with Savanna's scoli buddy Lyla and spend the day hanging out.  (We missed you, Lyla!!)  However, because pretty much no businesses or parks were open, we just did her appointment and headed home.  When we arrived at the hospital, they took our temperatures in the parking garage and asked us several screening questions.  We had made sure to bring our masks to wear too.

Next we went to x-ray.  (Savanna had been brace-free for 48 hours before this appointment, which allowed her spine to "relax" into its natural position.)

I knew it was a beautiful x-ray the minute I saw it (there's always a nagging worry in the back of my mind!), but I was blown away by the measurement they got on her:

8 Degrees!!

This is her most beautiful x-ray EVER!!!!!  Savanna was so excited too that her spine is "almost straight!"

Here's where we started in January 2014 at 52 degrees:

This is really wonderful news, especially in a time of not always good news in the world.  Simply AMAZING!  Also, she grew 1 inch in the last 6 months and gained about 3 pounds!  This is also amazing considering how slow growing she generally is.  

So, where do we go from here?  I suppose I could have pushed for moving her out of the brace, and I suppose I could have done that last time too.  (Remember, her doctor told us a while ago that we were now in "uncharted territory" with how to move forward.)  However, similar to last time, her Providence brace still fits (2 years in the same one!), she feels comfortable wearing it, and she continues to get correction in it.  Therefore, we will stay the course and keep bracing at night.  We will reassess at her next appointment in 6 months.  I have read too many stories lately of scoli kids whose curves have come back after they were "cured," and I just don't want to chance it.  

Slow and steady are still winning the race!

By the way, Savanna will be turning 8 in about 3 weeks, so I guess she gets an 8 degree x-ray for her 8th birthday!  Pretty cool.  Happy early birthday to her!!

Thanks for reading!  Stay well!