It's Brace Time!

After 2 MRIs, 16 plaster Mehta casts, and numerous x-rays it is now time for Savanna to get her brace.  It is sort of her "diploma" from graduating from the casting process.  We are so lucky that casting was a successful treatment for her!!  Before we get into her brace fitting day, let's review some recent adventures...

Adventures:

Hanging out at Burial Beer Company

Beach trip to Sullivan's Island!

Fun at Ft. Moultrie

Savanna and Emerson had so much fun playing in the sand.

Lunch by the light house

Picking up sea shells at Isle of Palms

Beach biking!

Silly girl

Boardwalk in Mount Pleasant

Obligatory sunset photos :-)

Cast Off Party

Way back in January of 2014, our wonderful friends had a "Cast On" party after Savanna got her first cast to show us their love and support.  Here is a link to those party photos.  Therefore, we wanted to have a "Cast Off" party to help celebrate Savanna's cast removal.  We were celebrating her strength and bravery throughout the whole casting proces,s as well as celebrating our friends that have provided us with so much support.

Fun in the bouncy house

Watching "Savanna's Casting Journey" video (more on that below)

Hiking at DuPont State Forest

Pumpkin Picking and Carving

Fun with Emerson

Halloween

We were, of course, the Pawsome Paw Patrol, with Savanna starring as Everest and Emerson as Chase.  I was Skye, and daddy was Ryder.  We had a blast on our neighbor's Halloween Hay Trailer!

Video:

I made a video to showcase Savanna's casting journey over the past three years.  I didn't even cry while making it, if you can believe that.  However, while watching it with all of our friends around at the "Cast Off" party, I may have shed a few tears...  I hope you enjoy it!

Last Cast Removal!

We went to Shriners in October to have Savanna's last cast removed after it had been on for 3.5 weeks.  They used this cast to help mold for her brace.  We would usually take the casts off at home; however, for a very clean cut, they wanted to remove it with the cast saw.  Savanna did not prefer the loud saw's noise, but she was really brave, and didn't even squirm.

The AMAZING Dr. Pete!  He and the Shriners' staff have helped to take great care of Savanna and our family.

The Brace:

We picked up Savanna's new TLSO (thoracolumbosacral orthosis) brace today.  I would be lying if I said that this was not an emotional day.  In theory it is a celebration, right?  Yay for the brace!  However, in practice, it really does suck that she has to go back into a torso contraption.  Yes, it can be taken off, which is really nice, but when your baby girl cries when it is put on because it is "hurting her tummy too much," your heart breaks a little.  Anyway, of course it is the best thing for her right now, but it still stinks.  It definitely seems slimmer than the cast, at least a bit, but it is still a pretty rigid structure on her little body.  Thankfully, the prosthetics guy was able to adjust it, and she did not complain anymore.  She has had it on since 12:30pm today and is sleeping in it now.  Fingers crossed that she gets used to it quickly.  What a trooper she is!!

Pretty purple brace with colorful stars

And, of course, Everest is on the side!!  It's her Paw Patrol brace!

Her "in brace" x-ray shows a curve of only 2.5 degrees!  That is really great news.  Maybe she'll even continue to achieve more correction in the brace??  (I certainly hope so, or at least that it helps hold her curve.  Dr. Pete said that he has had to put some kids BACK in a cast before...  That is not a possibility we want to consider, if we can help it.)  She will wear the brace pretty much all of the time (22-23 hours of the day) and will only take it off for baths, ballet, and swimming.

Next Steps:

Savanna goes back for a brace check-up and x-ray in March 2017.

This will be my last blog posting for a while, but I will make sure to provide another update after her next x-ray in March.  I have really enjoyed writing this blog for Savanna and all of you.  It has been a labor of love and has proven to be fairly therapeutic for me as well.  I hope it has helped our friends and family to stay 'in the know' about Savanna's journey.  I also hope it has helped to raise awareness about infantile scoliosis and has provided support and information to those families going through the same journey.

Thank you to Dr. Pete and Shriners, thank you to ISOP for bringing Mehta casting to the United States and being a resource for families in our shoes, and thank you to our friends and family for all of your support.  Also, thank YOU for reading!  Please have a happy and safe holiday season!

Here's to lots of swimming, real baths, and straight spines!  ~ Lisa

Last cast!!!!!!!!!!!!!!!!!!!!!!

LAST. CASTING. DAY.  O. M. G.

I cannot believe we have arrived at Savanna's last casting day!  I did not sleep well this week because of how excited I am over her (and us) being able to return to a "typical" kid kind of life without restrictions (and so many doctor appointments).  Savanna never had too many restrictions, other than no swimming/boating/bathing and sand play, but the cast really did limit us in many things since it was always so hot for her in the summer, etc.  I am really so unbelievably grateful to so many: Savanna's doctor, all of the Shriner's staff, our friends and family, and my scoliosis Facebook group family.  It is with all of these people's support and love that we have been able to successfully weather this crazy casting process.  We love you all so much!

Before I get into Savanna's last casting day, we have to see some of her latest adventures, of course!  :-)

Adventures:
July and August

Giving Everest a check up at the dentist

Goofing off with Emerson

Hanging out at the library

Feeding "Biscuit" the neighborhood pig

Super hero?

"I'm all beautifulled up!"

 Apple picking at Justus Orchard

 Helping make up some yummy eggplant parmesan - "Super Why" style

First Ballet Class!  She loved it!

  Hanging with her buddies at Shindig on the Green

Fun in the water during cast break

MRI...
Savanna had an MRI in November 2013 before the start of the casting process, to make sure there wasn't an easily identifiable reason behind her scoliosis.  (I talk about it in my first blog post here.)  No definite reason was found for the scoliosis, however, a small syrinx (fluid-filled area, cyst-like) was found in her spinal cord, extending from vertebrae C3-T12.

The doctors told us to follow up again with another MRI at some point.  Therefore, she had another MRI in August 2016.  The results were good.  Although the syrinx is still there, it has not changed in the almost 3 years since the previous MRI.  The neurosurgeon at Duke that reviewed her results (this time and the previous time) said the results were unchanged, and he did not recommend another follow-up.  This is great news to us.

I also found a study about idiopathic pediatric syrinxes, which made me feel pretty good too (abstract below).  Here's the take home message:  "Clinically, children with an idiopathic syrinx remained asymptomatic, stable, or improved in 91% of cases. The majority of syringes (87.5%) remained stable or shrank over time, with no apparent correlation between changes in size and changes in symptoms. Although longer follow-up is needed, these data suggest that the natural history of an idiopathic syrinx in children is benign, and that repeated imaging may not be necessary."

Syrinx Study Abstract:

LAST CASTING DAY!!!

We had to arrive at Shriners at 9:30am for Savanna's 16th and LAST casting day.  First, we had an x-ray...

Savanna got to use the new x-ray machine that put off around 15 times LESS radiation than the other x-ray machine does.  That's a good thing, because this girl has had lots of x-rays.

She started casting at with her top curve at 52 degrees in January 2014.  (This x-ray is so scary to look at now.)

Her top curve is now gone, and the bottom curve is at around 13 degrees.  

Dr. Pete said that some doctors consider under 15 degrees to be "cured."  I also know from my research that under about 10 should not progress again.  So, we are very close to that!  We are all very pleased by the improvement she has had!  We are moving to a brace next, as Dr. Pete does not think we will see any further improvement at this time.  It's really difficult to get rid of those extra few degrees.  

Here are some photos from casting today:

I caught Daddy sleeping a bit, but he caught me taking his picture!  

Getting all "petalled up" for the last time.

Pretty cast #16.  Pretty LAST CAST.... LAST CAST... LAST CAST!

What's next?
Savanna will wear the cast for about 3.5 weeks, then we will remove it at Shriners for the prosthetics department to make a brace for her.  It will take a couple of weeks before we are able to pick it up.  Here's how they will do it...

http://www.greenvilleshrinershospital.org/2015/06/the-making-of-a-tlso/

(They will not have to do a mold while Savanna is there because they will have her cast already to use as the mold to help make the plaster body model.)  We go back about 2-3 weeks later for her brace fitting appointment.

Donations
Savanna has always gotten hooked up with several new, cool toys each time we have had a casting day, and it has always made these long, stressful days so much brighter.

Greenville Shriners is always taking donations.  If you live near me, I'm always happy to take donations down there during our visits.  We'll be going back in about 7 weeks for Savanna's brace fitting appointment.  Please let me know if you would like to send anything with us.

Here's Greenville Shriners Facebook post from August 2016:

What does #SHCGreenville need right now?
We are in need of toys for infants to 3 years-old. **Due to infection control, all toys must be NEW.**

Suggested items include:
Toys that play music or make noise
Farm animals
Baby Blocks
Pop beads
Plastic trucks/cars
Stackers
See n’ Say toys
Fisher Price Little People and School bus
Play telephone
Vibrating ball
Xylophone
Baby books
Plastic large animals
Puppy Clackers
Baby Einstein toys
Push/ pull toys
Pretend play toys

Items may be delivered or mailed to:
Greenville Shriners Hospital
Attention: Child Life
950 West Faris Road
Greenville, SC 29605

Thanks for reading and for sending us love, prayers, blessings, and positive vibes!  They have all really helped us so much!

I'll do another post after Savanna's brace fitting appointment in October.