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.

Someone just turned FOUR!

Wow, we are already on Cast #15.  Hopefully we will only have (maybe???) 1 more!  That is already quite a bit of anesthesia and surgeries our little one has had to endure, but with results like we have been seeing, it is all worth it.  Before we get into this casting day, let's check out some of Savanna's latest adventures...

Recent Adventures

Camping!

On the road to camping

At our campsite

Looks like camping was a good time, right?  It was very promising.  However, unfortunately, it was not quite the experience we had hoped for, and let's just say... Not much sleep was had during our first and only night trying it.  We are a little shy about trying it again until the kiddos are a bit older.  It was awesome in theory though!  Ha ha...  

Playing at the park

Technically, Savanna should not be playing in the sand, as it could be pretty bad if any sand got in her cast.  (At best, it could make her itchy.  At worst, it could cause her skin to breakdown.)  However, we are all very careful while she's in the sandbox, and her shirts provide some good coverage for her cast.

Sponge bath time!

Preschool Graduation Program (Savanna did not graduate yet, but she was part of the program.)

Teddy Bear, Teddy Bear

I'm a Little Tea Pot

Someone just turned four!! (And we celebrated at Chuck E Cheese's with Savanna's buddies!)

Swinging with Emerson on the front porch

Beach Trip!

Because Savanna has to go through yet another summer in a cast, we are always looking for ways to take advantage of her cast breaks.  This time we planned a beach trip with the family.  It was a great trip, and Savanna loved playing in the pool.  She was not a big fan of the ocean, but I can see how it would be scary for a little girl like her.

First we removed her cast.  She could not wait to get it off so she could go swimming with her "best friend," her cousin Julianna.  Her skin and spine looked really good!  There was only a little bit of redness and heat rash to contend with.

Fun at the beach, in the pool, and at the water park

 

"Conehead" from the blast-from-the-past Friendly's!  (Savanna doesn't really like sweets, but she'll get down with some vanilla ice cream these days.  This silly girl wanted me to eat her M&Ms and take the chocolate off of the cone...  Like she had to ask!)

Casting Day

Do you know Paw Patrol?  If not, spend a few seconds with Savanna, and she will talk your ear off about that crew.  Her favorite pup is Everest.  Everest is a super cool mountain pup that helps to save the day.  Everest goes everywhere with Savanna right now.  It's pretty funny and cute.

Waiting in pre-op

Watching Paw Patrol while holding Everest from Paw Patrol

Daddy sleeping, yes sleeping, while the nurse and I hold the Paw Patrol videos when Savanna is in recovery.  It's been a long few days for us.  We just got back from the beach yesterday!

More Paw Patrol while eating Goldfish in her room

Getting her cast trimmed, petalled, and all cobanned

She chose dinosaurs and purple again.  She wanted to be like her buddy Lyla with the dinosaurs, and she just couldn't pass up purple.  :-)

We love Miss Stephanie!

Progress and Next Casting Date

Overall, Savanna's doctor was very positive about her progress.  It has been increasingly more and more difficult for him to do this casting procedure on her because her progress has been so good!  He has a hard time achieving the same level of correction than he has in the past.  This is great news for her!  It means that there is less and less correction to be had.  He wants us to do an x-ray at her next appointment and cast at least one more time for about 4 weeks (at which point the cast will be used to help mold a brace for her), as long as her numbers stay in the teens or get better.  She was at 13 degrees in April.  Please help us pray for continued good numbers!  Also, please help us pray for others on the same journey as Savanna who are not having as good of results.  We met a family with a beautiful daughter who has been holding at 49 degrees for over a year now.  I am pleased with Savanna's results, but feel sad for this little girl.  I wish I could give her family some comfort.  The little girl will likely need surgery in the future, which is not something any parent wants to go through.

Savanna's next (and last??) casting date is set for September 9, 2016.  In the meantime, please continue to keep her little spine in your thoughts and prayers.  Thank you for all of your well wishes over these last 2.5 years!!