Thursday, September 15, 2022

She's Looking Awesome!

Happy end of summer/beginning of fall!

It's only been 3 months since our last check in, but per usual, Savanna has had some adventures to tell you about before we get into her (awesome) Shriners visit!

Recent Adventures:

Camping with friends

Visit to Cleveland

First day of school

Baking a cake with a friend

First day of new dance class!

Visit to Shriners:

This visit was pretty great!  Just as we thought/hoped from the last visit in June (discussed here), Savanna had been standing a bit funny during the last x-ray, which caused her curve to look like it was about 19 degrees.  

However, this x-ray taken yesterday (September 14), looked so good that the physician assistant did not even measure the curve.  She said, "I did not even measure the curve.  If anything, it would maybe be about 6 degrees, max!"  How cool is that?  We have been so fortunate that Savanna has held steady for this long.  She has now been out of her brace full time since early February 2022, about 7 months.

She still has the spondylolisthesis, as seen in the x-ray below, but Dr. Pete is still not that worried.  He said that we will continue to monitor it and take lateral x-rays each time she has x-rays.  However, in most cases, the spondylolisthesis does not worsen for people, so it likely will not for Savanna either.

Therefore, we will continue on as we have been, and we will see Dr. Pete again in 6 months!  It turns out that the reason we went back in 3 months this time was because Dr. Pete wanted to do another x-ray sooner than 6 months, just because of the poor x-ray last time.  However, at least for the near future, we will likely stay on a 6-month check up schedule, unless anything concerning pops up along the way.  I do worry a little about her curve possibly returning during the rapid growth phase of adolescence, as I have seen it happen in other scoli kids we know.  I asked Dr. Pete about this, and he said that maybe 10-15% of his "infantile scoliosis" kids have a curve return in adolescence, and because of their history, he may want to put them back in a brace.  However, he also said that adolescent scoliosis is not necessarily related to infantile scoliosis.  

So, I will try to stop borrowing trouble with those worries, and I will instead focus on the AWESOME x-ray from this visit!  6 degrees!  Woot woot!!

That's all for now!  Thanks for reading, and I will post again after her next check up in March 2023.  

Tuesday, June 21, 2022

Happy Summer Solstice!

Happy Summer Solstice!

School's out and summer is IN!  Savanna recently had her 6-month check up with Dr. Pete, but before I get into that, we need a little 6-month recap of her latest adventures.

Recent Adventures:

Christmas Eve dinner (outdoors!) with friends

Christmas Day

After Christmas beach trip to see cousins

Later sk8rs!

January was snow much fun!

Practice makes perfect

Soccer kids

Battle of the Books!

Grandma comes for a visit

Playing Dungeons & Dragons after school

Camping with friends

Popsicles with friends

Trying Bubble/Boba tea for the first time 

Fiddlin' gig at the Fiddlin' 5K

Someone just turned 10 (!!) and celebrated with a mock sleepover

Visit from the grandparents

Family photo moment

June beach trip with cousins

Shriners Update

Communication in February 2022:

As I mentioned in my last post, I was starting to become worried that Savanna was developing lordosis due to her wearing of the brace at night.  Dr. Pete thought she looked within the realm of normal from his exam, but he did not do a lateral x-ray at that time.  However, I was still worried that the lordosis might get worse.  So, I started looking back through her curve numbers.  Here are Savanna's measurements over the last few years:

  • Feb. 2018 - 16°
  • (June 2018 - First night-time only brace)
  • Nov. 2018 - 10-14°
  • May 2019 - 8°
  • Nov. 2019 - 12°
  • May 2020 - 8°
  • Nov. 2020 - 9-10°
  • June 2021 - 8.61°
  • (June 2021 - Second night-time only brace)
  • Dec. 2021 - 6.76°

Because she had been holding steady under 10 degrees for approximately 2 years, and I was increasingly worried about the possibility of lordosis, in February I asked Dr. Pete if she could discontinue wearing the Providence brace at night.  Change is scary, especially when in comes to your kid's medical care, but I felt it would be okay to try.  Also, we knew we would be going back to Shriners in June for her check up, so this felt like a good 4-month brace-free trial.  Savanna was super excited to "not be so hot" while sleeping, and like the good patient she is, she understood that she may have to start wearing the brace again if her curve worsens.  Dr. Pete also agreed to get a lateral x-ray of her in June to assess the potential for lordosis.

So, as of February 2, 2022, she has not been wearing a brace (or cast) for the first time since she was 19 months old - EIGHT YEARS AGO!  Whoa.

Shriners Visit in June 2022:

We traveled to Shriners in June for Savanna's 6-month check up.  This time she got both a regular x-ray and a lateral x-ray.  I wish I could say that we continue to see improvement or her holding steady, but this visit was a mixed bag of sorts.  

First, her regular x-ray did not look very good at all and showed about a 17 degree curve.  However, we (the doctor, PA, and parents) all could tell she was standing a bit weird.  It looks like her hips are turned a bit, and I think she was leaning forward.  Dr. Pete did a regular exam of her, and did not see evidence of a 17 degree curve.  I suggested that we redo the x-ray that day, but he recommended just waiting until we come back in 3 months. 

Second, the lateral x-ray showed something new for us to keep an eye on.  Although the lateral x-ray did indicate a bit of lordosis, Dr. Pete still says it is in the realm of normal.  So, that's the good news.  However, apparently Savanna has spondylolisthesis (spon-duh-low-lis-THEE-sis), where one vertebra has slipped forward a bit compared to the other vertebrae.  According to Dr. Pete, hers is likely a developmental disorder and was not present at birth.  It is very common (in 18-22% of all people) and is sometimes an incidental finding when people are imaged for other reasons.  Thankfully, Dr. Pete said that she does not have to modify her sports or activities at all.

Here's a write up and image that better explains spondylolisthesis (except Savanna's was not caused by an injury):  

So, I am now newly worried about something else with Savanna's spine, but Dr. Pete did not seem too concerned at the moment.  Symptoms of this condition (when people have symptoms) include pain, numbness, tingling, etc.; and Savanna has never indicated any of these types of symptoms to us.  So, we will just continue to keep an eye on everything.

It took me a little while to process how I felt about all of this news, but I think I have decided that if Dr. Pete is not super worried right now, then I will try not to be either.  Also, we are going back in 3 months this time instead of 6 months.  This shortened timeframe could be because Dr. Pete would like to see if there is a change in either the regular or lateral x-ray, and maybe it could be because Savanna just turned 10.  I believe that kids are seen more often once they are starting to go through adolescence.  This is another period of rapid growth for kids, and it can be problematic for kids with scoliosis if their curves begin to progress again.

That's the update for now!  Please keep Savanna in your thoughts.  I will post an update again when we go back for her check up in September. 

Thanks for reading, and have a nice summer!

Friday, December 10, 2021

The Ponies are Back!

Remember my "It's Pony Mayhem" post from a while back?  Well, the My Little Ponies are back for their third trip around our family!  (Or fourth, if you count MY personal Pony Mayhem from the 80s!)  This time though, in addition to watching the now older crew of Ponies, Savanna is now into the The New Generation, and Sunny Starscout is her hero!  Stay tuned for some Halloween photos below, and you'll see just what Sunny looks like. 😀

It's been six months since Savanna's last trip to Shriners, so I'll give some brief activity updates before talking about the Shriners visit.

Latest Adventures:

June Beach Trip

July 4th - First time watching fire works live!

She's in awe...

Looks like we have two kitties now!

Selfie Time

Summer camping with friends

Violin camp teaching assistant

Trip to Majestic Meadows Alpaca Farm

More camping and lake time

Hanging with buddies

1st day of school for this 4th grader...

and 1st grader!

More selfie time

Apple picking with cousins

School photos!

Pumpkin Time

Fun but chilly hike in the mountains

Halloween!  She's Sunny Starscout.

Neighborhood Halloween Hayride

Hooray for science!  First covid vaccine in the books!  (By the time you read this, they will both have gotten their second shots too, thank goodness!)

Hiking with buddies

Visit to Van Gogh Alive Exhibit

Thanksgiving Day/Weekend


Story time for Moses

Shriners Visit on 12/08/2021:

This was a great visit, complete with a great x-ray!  Look at those numbers... 6.76 degrees (vs. the 52 degrees where she started)!  We will take it!  Dr. Pete always says the numbers are plus or minus 5 degrees, but still, this girl is looking good!  

We talked about if we should continue to stay the course or maybe make any changes.  Honestly, the same things apply now that have applied every time over our last several visits: the brace seems to be helping (and we know it is holding her curve in check at a minimum or even helping it improve), and she is fine with wearing the brace at night.  So, we will proceed on as before!  I feel like we are in this honeymoon phase of the brace wearing, where we have the flexibility for her to not have to wear it EVERY night, like at a sleepover or when camping, and the scoliosis will not magically worsen over those one or few nights.  It's really nice.

I did ask Dr. Pete about the fact that it seems Savanna may have some lordosis now.  Lordosis is the opposite of kyphosis, which is the classic "hunchback" kind of look.  Lordosis is where her spine is a bit more extended/over-extended as opposed to a typical spine.  See the image below.

Dr. Pete said he does see a bit of lordosis in her spine, but it was not too excessive.  He said it makes sense that she has some lordosis, because as the brace holds her side-to-side curve in check, it is also holding her a bit extended.  We tend to think of scoliosis (and bracing) in a two-dimensional plane, but it is really a three-dimensional issue that can be accompanied by rotation and extension.  I think we will continue to watch this too, but he obviously was not as worried about it since he wants her to continue with the brace for now.

As Dr. Pete reiterated, "We have won the war.  She should (hopefully) never need surgery."  We will continue to watch her through adolescence, probably while she continues to wear the brace, but one day we will be done with bracing.  

When we were done with her Dr. Pete appointment, we headed to Santa's Workshop!  Shriners is the best!  Savanna reminded Santa that she wanted a Sing & Skate Sunny Starscout, and guess what they found in the back of the workshop??  A Sing & Skate Sunny Starscout!  I can't believe Santa had that on hand for her.  What a treat!  (I guess Santa also forgot that he had already put one in my closet at home, but hey, I'll be able to return it!)  😉

We will go back to see Dr. Pete again in 6 months!

Thanks for reading, and I hope you have a wonderful holiday season!