Friday, June 15, 2018

It's Pony Mayhem!

It's safe to say that Savanna is pretty obsessed with My Little Pony now.  It has taken over her life quite a bit.  She reads about the Ponies, watches their show, draws and colors them, sleeps with them, wears socks with Ponies, and now has a new poster above her bed!  It's nuts.  She swears she still loves Paw Patrol too, but I'm not so sure...   None of the pups have been kicked out of her bed yet, but I think it's only a matter of time.  :-)   More on the Ponies later...

It's been a busy May and first part of June!  First, I'll start with some of Savanna's latest adventures, then we'll get into her latest Shriner's visit.

Latest Adventures:

Pretty Butterfly Ballet Recital

Hanging with her "bro"

Kindergarten Graduation.  Look who's a rising first-grader now!

Birthday Party for the Big 6-Year-Old


More Ponies

More Ponies

Not to worry, the kids still like Paw Patrol a bit too.  Here they are tailgating before Paw Patrol Live.  (It was a great show!!)

Visit to Shriner's: 

We went back to Shriner's at the end of May to pick up Savanna's 4th new brace.  However, this one does the job we need it to do!  Of course, it needed to be decorated.  What else would it be decorated with??  More Ponies! While wearing a Pony hoodie and watching My Little Pony on the iPad, of course.

Front view of the new Providence-style night-time brace

Back view of the brace

 Beautiful in-brace x-ray!

Twilight Sparkle's x-ray looks pretty good too!

We had a little bit of a learning curve the first day or so with this brace, but that's it.  Savanna can get it off by herself in the morning if needed, so that is a relief.  She cannot walk with it on though, because it digs into her side a bit and is painful when she stands.  We learned that the hard way.  Of course, she is doing really well with it, and she wears it all night, every night, without complaint.  What a trooper!

Her next check up will not be until 6 months from her last visit, so around the end of November.  Until then, please have a great summer and fall, and keep sending Savanna your love for continued success with her spine straightening!  I will do a new post after her next check up.  Thanks for reading!

Wednesday, May 2, 2018

My Little Rock Star!

I am in awe of this little girl, this big little girl, this amazing, super sweet and extremely brave big girl!  She is a ROCK STAR.  There is not a doubt in my mind.  I mean, the things she has been through that are SCARY, and she takes them all in stride.

Even Savanna's teacher thinks she is a Rock Star!

Latest Adventures:

We don't have quite as many new adventures to report, as it's only been 2 months since my last post, but here are some...

Is that a kitty in a box or a Savanna in a box?

Trip to Pops' House

ANOTHER fun snow day!

This is a funny photo from last summer that I just saw for the first time recently!

Big bad biker crew... watch out!

She's so happy with her new Trolls set!

Planting our garden

Monster Truck Show

Savanna reading a story to Emerson

Earth Day kiddos

Firetruck Festival

New Brace Molding Appointment:

We went to Shriner's so Savanna could be molded for a new brace (since she has **finally** grown out of the old one).  

I was honestly somewhat reluctant to post photos of the casting table, especially with Savanna on it, because they are kind of daunting and scary-looking.  However, I decided to go ahead and post them because the experience itself was really not scary at all.  Maybe it will help other families who have this in their future feel more comfortable with the idea.

Just to let you know, this is the same type of table used in the operating room when regular casting is done.  However, generally casting is done under anesthesia.  This time though, Savanna was awake for the whole procedure!

Casting table

I made sure to talk to Savanna about this procedure ahead of time, made lots of jokes about her doing some silly gymnastics on this thing, and acted confident myself (even though it scared me a bit too).  And guess who was the best patient ever??  No tears were shed, and no additional support was needed.  She did fantastic!  Also, it helped that the staff working with us were as good at keeping her laughing as they were at their jobs; simply awesome!

They put a fiberglass cast on her temporarily while pushing her spine the way they wanted it.

Savanna in the temporary cast.  It was not the most comfortable since it was pretty tight.  They next took her to x-ray to see how her spine looked.  This cast will be used to make the mold for the brace.

Savanna in the temporary cast in x-ray.  What a beautiful (and slightly over-corrected) spine!

Once Dr. Pete saw this x-ray and how great she did during the procedure, he gave Savanna a big hug and said he loved her!

New Brace Fitting Appointment:

We went back to Shriners April 18, 2018, (a month later) for her brace fitting appointment.  Here she is in the new brace, complete with Tracker on it.

Although the brace looked pretty good, after we got an x-ray, it showed a problem.  The top curve that we have been working on getting rid of is stabilized well in the new brace, however, this brace is actually giving her a new lumbar curve that was not there before.  So, they took the brace back to the shop to try to fix it.  After a long while, they returned with the brace.  She tried it on again, and we took another x-ray.  Unfortunately, the new in-brace x-ray looked pretty much the same.  Therefore, Dr. Pete told the brace guy that he was going to have to make it again.  Several hours later we were finally on our way home, but we would have to come back in a week to get another new brace.

Photo in New Brace #1 - notice new lumbar curve that does not show in the in-cast x-ray above.

Here's her 16 degree out-of-brace x-ray from February.

There was some great news that came out of this appointment though.  We learned that Savanna has gained 4 pounds and grown 2 inches since last August 2017!  This is amazing!  Especially considering that she basically did not gain any weight (or much height) for the previous year.  No wonder she grew out of her old brace!

She wore this new now-temporary brace home, and wore it overnight.  The next morning, she said the brace made her sides "feel weird."  I asked her if they hurt or just felt different, and she replied that they "felt different."  However, she then gave me a hug, which was code to me that she did not feel well in this brace.  I already had my reservations about it since it was giving her a new curve, but after her reaction to wearing it for a bit, I decided she did not need to wear this brace.  So, she has been wearing her old brace again while we wait for the next new one.

You have to understand, this is a girl that in over 3 years of this process, she has rarely ever complained about a brace or cast.  We have never had an issue with compliance.  So, because she has a problem with this brace, I am going to listen to her.  Upon further inspection of her brace, it does have quite a big protrusion inside to push her spine.  To me this would feel like someone with their fist in your side.  So, I made sure to call the orthotics guys to ask them to make that "push" more gradual for the next go around.

"Push" inside the brace. (It's hard to get a good photo of it.)

Second New Brace-Fitting Appointment:

We went back to Shriner's again on April 25, 2018, for her second new brace fitting.  Long, long, story shorter... The second new brace is still giving her a lumbar curve, albeit less of one.  However, her thoracic spine looks great!  They tried to fix the brace again, and again the x-ray looked the same.  I became concerned that perhaps she has developed a real lumbar curve now.  Her doctor said that she does not have a lumbar curve.  The brace is pushing her too much in that area.  So, they are going to make her ANOTHER new brace....  This has been an extremely frustrating process.  Her doctor said that in 21 years of bracing, he has never had a case that was so challenging to figure out.  I know that these folks know what they are doing too!  Therefore, we go back on May 2, 2018, for a third new brace.  Maybe 3 times is the charm??  In the meantime, she is wearing this new pink brace, but not full time.  I really have mixed feelings about her wearing a brace that introduces a new curve, even if it is addressing a real curve, you know?

Second new brace with Tracker.

We still have that lumbar curve, although the thoracic spine is perfect.

Third Time's the Charm?

In one word, "Nope."  Third trip down provided the same results even with a third new brace.  This time, it's got My Little Ponies on it (her newest obsession).

We met a duck along the way today too...

Soooooo, since this third new brace showed us the same results, we need to try something different.  This case has baffled both the doctor and the orthotist.  It's been super frustrating and tiring for us all.  Therefore, I asked about the possibility of Savanna wearing a night brace, since they provide more stabilization of the spine because they are bigger.  Her doctor liked that idea, so she got fitted for a Providence brace.  It's a different process than the TLSO/Mehta brace molding in that she is on this table with holes in it where they add pegs and blocks to push her spine the way they want it.  They also take lots of measurements and an x-ray to confirm their results.  Then they send off for the brace.

Here's my little rock star on the Battleship-style peg board.

Beautiful spine

Ellie the Elephant is looking good too!

We will go back in about a month to pick up and try on the new Providence brace.  Supposedly, these types of braces can provide additional correction while the kids sleep, some even better than braces that are worn all day.

So, here I am with lots of mixed emotions.  I am pretty frustrated that the regular all-day braces did not work out, and I am scared for her to not wear a brace all of the time for fear of curve progression.  However, her doctor says, and I agree, that it's better for her to brace only at night with a brace that holds her straight than to brace all day with a brace that introduces a deformity.  It will be so awesome for her to be "free" this summer during the day for heat management and for her general fun and ease of movement.

With a new brace come new challenges though.  I am not sure that she will be able to get out of bed easily or go potty in the middle of the night by herself anymore.  However, I am not going to borrow too much trouble about those issues right now.  I will just take them as they come.

She will continue to wear the third new brace at night for the next several weeks, even though I am still on the fence about what's the best course of action right now.  I really don't want her to get out of the habit of wearing a brace, plus it does help her thoracic spine.

Here's an idea of what her Providence brace will look like, although Savanna's will be hot pink with red straps.  I have already ordered some My Little Pony decals to decorate the new brace.  This is a photo of the front of the example brace, so hers will be pretty long on one side too.

I will post another update after we pick up her brace in a few weeks.  Thanks for keeping her in your thoughts and for all of your support!