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!!

Monday, March 6, 2017

First Check Up Since the Brace Went On!

Did you notice the new blog photo??  Look at all of those casts!  It's crazy when you see them all lined up like that!  What a brave superhero we have.  I took a copy of this photo and had it framed to give it to Shriner's.  The quote says "Thank you to Dr. Pete and the Shriners' staff for helping our little super hero beat scoliosis!"  We were able to get it all framed up in time to take it with us to her check up today.

Before we get into her check up, here are some of Savanna's latest adventures...


Highlights from our family photo shoot!

Building a bird house with daddy

Thanksgiving visit to family

Hanging with Anna and Elsa at a friend's birthday party

Christmas Time - some new Christmas presents!  A.J. (formerly known as Spunky and Spunka Wunka) is sporting a matching nightgown to Savanna's.

Grocery shopping with the Catastrophe Crew...

Big snow storm!  The kids (and parents) had a blast sledding just up the road from our house.

Silly times

 Play time

Emerson's Birthday - our little (big) man turned two!!

I think he's getting a little too big for the baby scale!

Brace Check Up Appointment:

This morning we traveled back to Shriner's for Savanna's first check up since she went into the brace.  We are always a little nervous before her x-rays because we are not sure what we are going to see.  However, she has really worn the brace day in and day out, with only a two hour break most days (occasionally longer due to sicknesses), since she got it on.  We have been super compliant with the doctor's instructions.  We think that she has grown quite a bit since she got the brace on maybe due to the brace not being quite as constricting on her, maybe because she was due for a growth spurt, or both.  Hopefully we were able to capture that growth during the wearing of her brace.

X-rays from April 2016 and September 2016, respectively, ranging from 12 to 19 degrees.

X-ray from today below (on the right).  She's measuring at 15.3 degrees right now.  So, not the sought after 0 degrees that all scoliosis patients would like to achieve, but we are on our way!  It's really interesting that her curve seems to move around a bit.  In September it was in the lumbar (lower) region.  Now, it has moved up higher into the thoracic region a bit.  Ultimately, these are good results for a brace-wearer.  Not only is the brace helping to hold her curve, but it seems to be helping her with more correction too.  Her doctor was very pleased and said, "Things are looking good.  What I see in person is what is reflected on the x-ray.  See you in 6 months!"

I am always a little bummed after her appointments because even though I try to keep reasonable expectations, I am always hoping for the results that will help her get out of the brace for good.  We are just not quite there yet.  However, we are doing everything we possibly can right now, AND she is continuing to improve.

After Savanna's appointment with Dr. Pete, we went to the POPS department (Pediatric Orthotics and Prosthetics Services) to get her brace adjusted slightly.  David in POPS gave Princess Savanna/Anna (from Frozen) a new tiara today!

Then, we went to see Arynn in Public Relations to give her Savanna's picture to hang up.  She said they will hang the photo in the surgery waiting room.  I think that is an awesome place for the photo.  I can't wait to see it once it's up.  Also, I can't wait for Dr. Pete to see it too!

Not only did we get to see Dr. Pete again today, but we also got to see Savanna's scoliosis buddy Lyla!  Lyla's mom and I have been online friends for several years now since our little girls both started the casting journey, and today was the first day that I got to meet them both in person!  It felt like I've known them for a long time.  :-)

Lyla is now in a brace too, and has been since last May.  It was awesome to hang out with Lyla and her family today.  Savanna and Lyla were like two peas in a pod, and they had a blast playing together.  They got to meet Sidney, a.k.a. Miss Greer, a lovely pageant winner who has also been a patient of Shriner's (and Dr. Pete's) for the past 11 years due to her scoliosis.  She was officially released as a patient today at the age of 21 after surgery at the age of 12 when 2 titanium rods were placed in her back to help her curve.  Unfortunately, her scoliosis was not found until she was 8 years old, so casting was not an option for her.  She did wear a couple of braces before her surgery, but she was not able to get the correction she needed.  What a great feeling today was for her to be released as a patient and to have no restriction on her activities!

Walking around Greenville with Lyla

"Feeding" coins to a boar (warthog?) for good luck

Saying goodbye to our new friend.  Awww...

Next appointment:

Savanna will have another check up sometime in August, and she will have another x-ray.  Even if this x-ray shows that she is continuing to be stable or improving, I imagine she will keep wearing the brace until she grows out of it.  If her curve is still good at that point, maybe she'll be brace free, but maybe not.  We'll see what her doctor has to say.  I have to keep reminding myself to be patient...

I'll post again after that appointment.  Until then, please have a wonderful spring and summer!!

As always, thank you for reading and for keeping Savanna and all of her scoli warrior buddies in your thoughts!