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
Goofing off with Emerson
Hanging out at the library
Feeding "Biscuit" the neighborhood pig
"I'm all beautifulled up!"
First Ballet Class! She loved it!
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.)
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.**
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
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
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.