I started this blog to chronicle my daughter's journey through the world of Progressive Infantile Scoliosis. --
Slow and steady have won the race! She started casting at 19 months old with a 52 degree curve. Over the course of 2.5 years with 16 casts, 1.5 years in a TLSO all-day brace, and now two years and counting (as of May 2020) of wearing a night-time Providence brace, Savanna is now at about 8 degrees!
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:
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!!
Savanna had her 6-month check up with Dr. Pete on November 14, 2019. The appointment went well, but before going into that, let's take a walk through some of Savanna's adventures over the last 6 months:
Bluebirds in Ballet
Savanna won "Best Listener" in her class
Someone turned seven and celebrated with a "mock sleepover"! [It's awesome; all the makings of a sleepover (e.g. jammies, sleeping bags, popcorn, movies, staying up later than normal, etc.), but the kiddos go home and sleep in their own beds!] Hatchimals were her latest obsession!
Hiking at Moore Creek Falls
"Broadway" Jazz Dance Summer Camp
Family trip to Isle of Palms, SC
Memphis Kiddie Park in Ohio
Camping at Lake Santeelah with friends
Savanna showing off her loot from her post-eye surgery care packages. She had bilateral strabismus surgery to correct some misalignment of her eyes. The surgery went very well! Geez, the things this girl has to go through... What a trooper she is!!
Aunt Tracy comes to visit
Violin Camp (She loved it so much that she is now taking lessons!)
First Day of School!
Silly "Miraculous" girl
Fun at Venardos (People-only) Circus
Justus Orchard Apple Picking
Drumming at LEAF (Lake Eden Arts Festival) with Darrell Rose
Halloween (Ladybug and Queen Bee from Miraculous, Black Kitty, and Biker Dude)
Trip to the Greenville Zoo
Pumpkin Smashing at New Belgium
Savanna's first "recital" at The Hop Ice Cream Shop
Trip to Shriners:
All in all the appointment was good. She is holding steady at about 12 degrees.
This is amazing considering where she started at 52 degrees (middle photo below).
Here's the side-by-side comparison for this visit vs. last visit. Last time, they measured her at about 8 degrees. However, as you can see in the x-ray, she is holding a bar, which likely made her look straighter than she really is.
Of course I always want her to be at zero... but we will take 12. Her doctor said that he would not even generally brace someone with a 12-degree curve, but because of her history, we will continue to brace. He is super excited with where she is, and indicated that because she was able to make it to age seven without needing growing rods, etc. (and we don't see any future need for those at this time), this means that scoliosis ultimately should not impact her quality of life in the future. What awesome news! She will continue to wear her Providence brace at night only, and we will go back for another check up in 6 months.
It's been a long almost-6-year journey (see where we started here), but it's so wonderful that we have seen the results we have!
No visit to Shriners would be complete without a hangout sesh with favorite scoli buddy Lyla. We tried out The Children's Museum of the Upstate, and it was AMAZING! 3 floors of fun, and we only made it through 1.5 of them before we had to leave. Next visit to Shriners, we will probably head back there (if not sooner!). It was super cool!
Savanna and Lyla in the rocket ship
In the wind tunnel
At the grocery store (it was pure chaos!)
2-story climbing nest
Savanna and Lyla with a drum that beats to match your heart beat. Really neat. (Odette is making sure the big girls stay in line.)
Time to go camping and fishing
Trying to pull herself up with pulleys (By the way, the big reddish thing in the background is a stomach you get to travel through. It makes some interesting noises...)
Thanks for reading! I will post again after our next visit sometime in May 2020. Happy Holidays!!