Eclipse Party and brace check-up!

I'm sorry it took me a little longer to get this blog posting out than in the past.  It's been about 6 months since Savanna's last check-up and my last post.  We did have her appointment on August 21, the day of the eclipse (!), and we were in the area of 100% totality.  (It was a pretty cool site to see.  Shriners had a viewing party complete with Moon Pies, Sun Chips, music, eclipse shirts, and viewing glasses.)  Usually, I get out a blog posting on the evenings of her appointments, but this time I needed some more time to process our day.  More about her appointment later.  First, I want to show you some of the cool adventures she's had since March.

Recent Adventures:

Fun at the Nature Center  

Pre-K Graduation (next stop Kindergarten!)

Ballet recital

Flower Girl at a family wedding in June

Somebody turned five!! (Someone else turned 40...)

Beach trip with lots of family in June

Soccer camp in July

Flower Girl (again!) with her brother as Ring Bearer in July

More fun!  Canoeing, Swimming, Hiking,Visiting family

Brace Check-up and X-ray:

This day started off pretty good.  We didn't encounter much traffic on our way to the hospital, even though we were traveling to the area of 100% totality!  Once we got to the hospital, Savanna got an x-ray.  Unfortunately, this x-ray looked a little worse than the previous x-ray, so her curve has progressed some again.

X-ray on left from March 2017, and x-ray on right from August 2017

The numbers on the x-ray haven't increased much measurably, but it's clear that the curve looks worse.  Needless to say, this has felt like a punch to the gut, and punishment for a fun summer where Savanna has been able to be a "typical" kid with lots of brace-free swimming, soccer camps, and running around without being too hot.  Did her curve worsen because she had extra hours out of her brace each day?  Does her spine really curve that easily??  Or, is it because braces in general don't always seem to hold/improve curves as well as casts do?

One of the issues here is that she is so slow-growing...  She will only continue to improve if she grows taller while wearing the brace or cast.  It does not appear that she has grown much taller, if any, or gained any weight since March.  Therefore, we have been exploring different avenues for how to proceed from here.  Her doctor asked if we wanted her to go back in a cast because he was worried about her curve getting worse again.  However, because she is so good about wearing her brace when we ask her to, going back into a cast will not be necessary at this time.  The doctor recommended that we come back in another 6 months for an x-ray again, but the more time I have to process this visit in my mind, I think I will request for us to go back sooner.  I can't wait 6 months before I know if she is continuing to get worse.

Why am I so upset by this news?  One obvious answer is that we have had so much improvement throughout the long, hard road of casting, and we don't want it all to be for nothing.  In addition, this feels like when we first got news that her curve had gotten up to 40 degrees when she was 17 months old.  Also, this is the first time that her curve has ever worsened since we began treatment.  Finally, she is starting kindergarten next week (Can you believe it??), and I had really hoped for her to be brace-free for multiple reasons (e.g. the brace is hot and limits her mobility to a degree, it's a little cumbersome, and it is different from the other kids...).

Even with this upsetting news, we were still able to have fun at the Eclipse Party.  Savanna got to hang out with her scoli buddy Lyla (who is now able to be brace free for good!!  Way to grow, Lyla!!) and her little brother.  It's been awesome to connect with Lyla and her family these past couple of trips to Shriners.  They are such great people.  :-)

100% totality!

The girls with their amazing doctor.

Please continue to keep Savanna in your thoughts, and help us pray that she grows a bunch soon!!  I'll write another post after her next appointment.  Thanks for reading!!