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, 3.75 years of wearing a night-time Providence brace, and now 7 months with NO brace (as of September 2022), Savanna is now at about 6 degrees!
Savanna
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) 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:
(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!
Thanks for the update. Great news from your house. Love you. Uncle James.
ReplyDeleteThanks, James!!
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