Monday, February 19, 2018

100 Days of School and Brace Check-up!

It's been about 6 months since Savanna's last check up (and my last post).  A lot can happen in that amount of time!   For example, this sweet girl is already over half way through kindergarten!

Savanna's Latest Adventures:

Here's what happened right after her last brace check up... this big kid's first day of kindergarten!

Crazy Hair Day!

My future engineer....having fun with PVC.

Open House Night.  Savanna's sweet pre-school teacher came to check out the school.  (It's where she went as a kid too!)

Trip to the lake.

Great write-up about Savanna for Shriners.  They provide services to all families in need, regardless of a family's ability to pay.  Therefore, they are always looking for support AND donations!

Cookie making.

School Fun Run!

Hiking to waterfalls!

Pumpkin picking.

Halloween!  Just a couple of trolls (Biggie and Poppy, of course) plus a Dinosaur and his cave mama.

Post-bath sibling snuggle time.

Savanna's passive solar house.

Thanksgiving with friends.

Shenanigans with more friends.

Snow day!

Fun at The Nutcracker.

Then a trip to Paw Patrol Live.  What a blast!

Obligatory Santa photo!

Christmas Eve Fun.

Christmas Day!

Cousin visit and more snow time!

Some of Savanna's artwork.  Translation: "I hug people"  :-)

The Big Man turned Three!!!

Savanna's Brace Check-up:

This sweet girl has been in the same brace for almost a year and a half now!  It's holding up well, but definitely is starting to show some wear.  During her visit to Shriners this time around, we first had an x-ray, and guess what????  There is still a curve, but it is looking better!!!!  She is down to about 16 degrees!  Her growth over the past 6 months (almost 1.5 inches!) and her constant wearing of the brace have made this possible.  We were hoping for her to at least stay stable, and honestly, I was really concerned that we would lose some correction after her last visit.  However, for her to continue to improve like this has been an amazing surprise!

Waiting for the doctor.

The amazing Dr. Pete!

Awesome x-ray!  The one on the left is where we started at 52 degrees.  The middle one is from August 2017 (19.7 degrees), and the one on the right is from today (16 degrees!)!  Plus in the one today, she is leaning a bit to the right, which means the curve is likely even less!

Fellow scoli buddy Lyla, who is still staying straight!!  Way to grow, Lyla!

Dr. Pete and three of his scoli warriors. (Thanks for the photo, Melissa!)

What's Next?

Well, since Savanna is doing really well, there wasn't any more talk about going back in to a cast (woo hoo!), however, she is starting to outgrow her brace.  So, we will be headed back to Shriners in about a month so Savanna can be molded for a new brace.  This time she wants a pink brace with a picture of the Paw Patrol pup Tracker on it.

Stay tuned for another blog post in about a month about that visit.  It promises to be an interesting experience since they plan to put her on a casting table and "cast" her temporarily.  Once the cast dries, they will take it off to make the brace.  All of this will happen while she is awake (i.e. no sedation)!

Thank you to everyone who has said a little prayer for our girl.  Slow and steady wins the race!

Wednesday, August 23, 2017

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!!