Updates

It has been a while since we posted anything - busy life is to blame I guess.

We appreciate the occasional comments from people who stumble across our little blog and we hope that in some small way something here is helpful.

Some updates...

Schroth method - both girls are still doing their exercises...mostly...! We have appointments every few months to check in and they get re-inspired to do them regularly. Both girls are keeping steady with their curves it seems, both show improvements in lung capacity which can be negatively impacted by scoliosis, and both have improvements in various smaller areas (the uneven hips are more even, the smaller curve in the upper back is less pronounced, etc). Very encouraging!

Pain - back pain for Dancer Girl remains drastically reduced from her pre-brace, pre-Schroth days. It does pop up now & then but she is also pushing herself as a dancer so that is probably to be expected. Cello Girl rarely complains of back pain.

Dance - both girls continue to dance. A lot. It seems that the only real issues, particularly for Dancer Girl, are with any "acro" types of movements. Their Schroth specialist (who is also a dancer) has told both girls to avoid that style as much as possible - hyperextensions of the lower back, particularly if they are repetitive or last for extended periods of time, put too much stress on their biggest curves.

Both girls are en pointe now and show no particular difficulty with it related to their scoliosis. Sometimes there are some movements in modern dance or African jazz that put strain on Dancer Girl's lower back, but she is learning to anticipate those moments and adjust accordingly.

Brace - Dancer Girl remains brace-free and is not expected to need it again as she has officially stopped growing. Because her curve is at 28 degrees though, we will keep an eye on it to make sure it doesn't get worse as she gets older.

Cello Girl had a growth spurt but her curve seems to be holding steady. Her recent x-ray showed a slight improvement actually, although it is within the margin of error. Still, even if it's an error, it's in the right direction! So, no brace for her either!

Diving In

Last week Dancer Girl began her intensive therapy sessions for her back using Schroth techniques at Scoliosis 3DC. We met for the initial 2-hour session where we were a bit overwhelmed with all the information, but in a good way. It is clear they take each person case by case to figure out the best exercises, stretches, breathing techniques, and ADL adjustments. This is not a one size fits all program.

They took pictures of everything and we will end up with a binder full of personalized instructions at the end of the program. They will also take video & send that home with us upon completion of the sessions.

The therapist was wonderful - informative, friendly, funny, and thorough. She also happens to be a dancer! This was nice for Dancer Girl, plus the therapist was able to use dance terminology for various body movements and positions as a way to help her learn the best ways for her to sit, stand, move, etc.

It turns out that she has been doing most activities of daily living (ADLs) wrong. Sigh. The way that is most comfortable for her body is typically not what is best for her back. The new ADL techniques will help counteract the curve rather than play into it.

The picture isn't Dancer Girl but it is similar to her curve issues and shows what we get - photos with instructions for how to sit, stand, lie down, reach, carry, etc. You can see in the left picture that the girl is leaning with/into her curve as she sits creating an increased lumbar concavity.  A simple correction for picture two shows how she has gone against the curve and reduced the lumbar concavity as a result.

We will go back three times a week, two hours at a time, for the next three weeks. I was so proud of how Dancer Girl took everything in, paid attention, demonstrated that she was learning and listening, and didn't get overwhelmed at having to adjust nearly everything she is doing in her daily routines. It has been an amazingly positive experience so far and we are quite certain that we will come away with a variety of useful strategies to help Dancer Girl keep her back curves from getting worse.

Schroth introduction

We had our first meeting with the doctor who runs the clinic closest to us (Dr. Marc Moramarco at Scoliosis 3DC).  People come from all over the world to get treated here so we are fortunate to live very close - a 15 minute drive in fact!

Everyone was incredibly friendly, making every effort to be sure Dancer Girl wasn't nervous. In fact, they assured her so often not be nervous that she began to think there must be something to be nervous about!! (There wasn't...)

This was the initial assessment.  He took a good look at her most recent x-ray and then examined her back, taking photos so he and the other therapists in the clinic can be sure to be on the same page if we were to continue with treatment.

We learned so much in just one visit!

We learned more about her specific curve than we had before - in fact, she has four curves!  The main one is at 28 degrees and is the one we knew about.  The others are much smaller and are essentially compensatory as her body tries to have her stand straight.  (He said having 4 curves is better than 3 because that last small curve at the top is what makes her look like she is standing up straight, making the scoliosis essentially invisible to the casual observer).

He showed us specifics about her curves and how they impact her posture, talking about each one individually.  He showed us how one small movement could make her back shift more into place right before our eyes.

Basically the program is designed to give you techniques for stabilization and activities of daily living to put less strain on the curves. They provide you with individualized techniques for your specific curves to help strengthen muscles and improve lung capacity which is likely impacted by the scoliosis.

He said that a person that goes into adulthood with less than a 30 degree curve is less likely to have it worsen with age.  Over 30 and it is more likely to progress.  Dancer Girl, at 28 degrees, is right on the edge of that magic number.

This program targets the specifics of each individual person's case with an intensive plan.

This program can and does get correction, but it is not guaranteed.

This program is generally not covered by insurance.

This program is expensive because it is intense and specialized.

The question then was whether or not to do it - Dancer Girl needs to be fully committed for it to work and it is a financial investment.

In the end, she was quite impressed by what we learned during our assessment visit and we have decided to go ahead and give it a try.  A new brace is also expensive, and while this costs more than a brace, if it means she can stay free of a brace from here on out then she is all for it!

We have scheduled her intensive sessions beginning in May - three weeks, 3x a week, 2 hours each time - and will let you know how it goes!

Emotional Day!

It has been a while since we posted anything.

Mostly because things were sort of coasting along as far as the scoliosis and the brace, but also because we have been buried under snow and our routine has been challenged time after time with snow days and rescheduling!

Recently though, Dancer Girl had been complaining of her brace not fitting correctly and things just not feeling right.  We made an appointment to hopefully get things adjusted to relieve the discomfort.

We are looking at the real possibility of being brace-free by June so obviously didn't want to hear that she needs a new brace.

              The news was not what we hoped...

Dancer Girl has grown about another inch, despite us all thinking she had stopped. Her brace clearly doesn't fit properly anymore and can no longer be worn effectively. The brace guy said he would recommend a new brace to her back doctor.

         Sigh.

We set up an appointment for two weeks out to let things sort out with getting the doctor's order, insurance coverage, etc.

Dancer Girls wasn't happy. So, we went out for frozen yogurt and did some shopping - seemed to help us both just a little bit!!

When we got home there was a message from the brace guy - he had talked to her back doctor who seemed to think that there really wasn't any point in getting a new brace since she was to be out of it by June.  By the time we got the brace fitted properly she'd practically be done with it!

So...basically she is done!  He said that IF she can wear it at all between now & our June appointment to go ahead...

         Right. Like that's going to happen!


                 She is thrilled! No more brace!!

I am happy for her but also wary - what if, when we get to the June appointment, her doctor says that the last three months brace free weren't good for her back, it was too soon, and she does in fact need a new one? That will be devastating. We will deal with that if it happens, (and will be praying that it doesn't) but for now Dancer Girl is looking forward to sleeping well again!

Nights it is...

Dancer Girl really wanted to try and go without the brace at night when her hours were reduced.  We tried for a number of weeks to make it work but we both quickly realized that we were juggling her busy schedule and brace-free activities so much she was in it most nights anyway to get her hours in.

So she wears it only at night now.  It seems to be working alright most nights. And, she even got a weekend free of the brace at a youth retreat up in New Hampshire recently.

Now that she is in it mostly at night her need for clothes that fit over the brace has been reduced.  The ones she has still fit fine though so if she needs to she can wear it during the day and still have it be nicely concealed. (The line at her waist on the photo is from a belt, not from the brace. The sweater was found at TJ Max).

Maybe our next post though will be what she chooses to wear over it at night... haven't done the pajama post yet!

Finding the new norm

Dancer Girl was able to reduce the hours in her brace recently.  This is great news because it means that the brace is doing it's job and we are heading towards a brace-free day!

However, it means adjusting our routine and we are finding it harder to do than we thought!

Dancer Girl prefers to get her hours in during the day and avoid sleeping in the brace.  She hasn't ever fully gotten used to sleeping in it.  Many girls do, maybe even most, but for Dancer Girl it has ben a struggle.  She wasn't a good sleeper before the brace though...

So, to get her hours in during the day she literally has to wear it pretty much every waking hour. That is where the problem arises.

She dances.  A lot.

     She has youth group where she'd rather not wear the brace.

            And church where she often helps in the nursery.

                   And outings with friends.

                          And homeschool classes or field trips.

You get the idea.

Suddenly getting 10-12 hours into the day isn't so easy. So we are trying to plan ahead & juggle days and nights in the brace to get her the hours during the day while reducing the number of nights she wears it.

It doesn't always work, and can result in frustrations, but we are getting better at finding our new norm.

The rotuine

Dancer Girl has now been in the brace for 10 months of the "about a year" time frame. We have a routine fairly set now and most days she gets her hours in.

She wears it to bed most nights, takes it off first thing in the morning for a bit of a break for a shower, & during breakfast. Then it goes back on.

We homeschool, so most of her brace hours end up being at home which is nice for her.  But, we do still have many days where she needs to wear it out to classes & groups, on errands, shopping, to church, etc.

On days that are heavy with after-school activities we need to be sure to get those hours in during the day.

There are days now & then when 18 hours doesn't happen - extra dance rehearsals for example, or a special outing or event, being sick & curled up in bed, or an 8-hour visit to the ER for possible appendicitis (it wasn't the appendix but was still very painful)...

In a few weeks she will go to her back doctor for a series of x-rays to see how she does without the brace on compared to when she is in the brace.

She is hoping to be able to reduce her hours in the brace at that point.  A lot.  The doctor told her last time he was hopeful she could reduce it enough to wear it "just at night". For her that was not good news - she would rather wear it during the day and not at night! I don't blame her actually...

Just Keep Dancing...

Dance has taken over our lives.  But it's all good.

Dancer Girl has picked up additional ballet and modern classes at a second dance studio, both of which are taught in different styles than she is used to. This has proven to be a bit of a challenge and it is exciting to see her be pushed to take her strong foundational skills and use it in different ways.

The director has been wonderfully accommodating of the scoliosis and has been checking in regularly to make sure that she is not pushing Dancer Girl beyond her limits physically, while still pushing her as a dancer.

I think it has been good for Dancer Girl to see that other teachers will accommodate her back pains and limitations - that it's not just those who know her well that are willing to work with her through this.

We are seeing that many of the stretches for dance have been good for her back and the routine core work will only help to strengthen her overall.  And so, while it is not without it's pains, it seems as if dance has been good for her so she will keep it up.  And we are thrilled that she can keep going because it brings her such joy.  It brings us joy as well as we see her grow and develop from the little girl who likes to dance, into a true "dancer" who shares her passion with others.

Helpful Hints for the Brace

We thought we would post a few of the blogs we have stumbled across over the past few months in our scoliosis journey.  Some have been found through searches and others have come our way from friends.  Still others found us and commented on our posts so we checked out their blog in return.

In the end, they are all helpful in some way - fashion, daily life, sleeping tips, support groups, etc.  We hope you find them helpful too.  (Most of these are found along the side bar on our main page but we thought we would compile a few favorites here as well).

http://scoliosis-fashion-help.blogspot.com/

http://lifewiththecurve.weebly.com/

http://cingcurvesdifferently.blogspot.com/

http://scoliosisstories.webs.com/fashioncorner.htm

100 Reasons to love your brace

http://www.curvygirlsscoliosis.com/

Rough nights

Last night was hard.

For some reason Dancer Girl couldn't sleep.  She couldn't get comfortable.  She just couldn't sleep in the brace.

She has been doing so well lately but last night was frustrating & painful, and there were tears.

Lots of emotions were voiced...

         "I hate this thing"

                        "I wish I didn't have to wear it anymore"

                                                 "I wish my back was normal"

                                                                  "I wish I could have a real good night's sleep for once"


But, we were able to move on to the realization that going through this will make her a better person.

She will have a better understanding of what it is like to live with pain.

                   She can be truly empathetic and understanding as a result.

                                   She can be a better friend to others.
                             
She can learn that her friends and family love her no matter what, even when she is angry & frustrated & upset, and she can learn to give the same grace to others in return.

She can learn that others are praying for her, and she can do the same for them.

It is difficult in the midst of it all to truly grasp all these lessons but it was a good beginning for this sort of conversation.

My prayer is that the lessons learned will stick with her, but also that the rest of us will learn them and apply them too.

Flying with the brace

We recently returned from a wonderful trip to visit family.  We had great fun reconnecting with aunts, uncles, cousins, parents, grandparents, and friends.

This was our first time flying with the brace.

The plan was to have Dancer Girl take it off to go through security so there would be no embarrassing beeps and possible searches or questioning.

Then she was going to put it back on to board the flight and wear it on the plane.

That didn't last long.

The seats are too uncomfortable, the aisles too narrow, the maneuvering in and out of spots too difficult. Being quite tall she is already lacking extra comfort space on an airplane, especially if the person in front of her reclines their seat.

Off it came and it was stowed in a bag in the overhead compartment.

We had two fairly short flights plus customs so she would have had to take it on & off multiple times for security and getting on & off planes.  Perhaps on a longer flight she could have figured out how to make it work but the thought of changing in and out of it in short succession was daunting.  In the end we opted to have her not wear it on the plane and to wear it when she arrived, but after the initial hugs and hellos.

I think the hardest part about having it along on vacation was the unpredictable schedule - sudden outdoor activities like a beach day or two, horseback riding, playgrounds, etc. that are not brace friendly were quite common.

She did wear it every night and whenever we weren't out so in the end she got a good number of hours in every day.

Now we are back home and can relax until things gear up for the fall so she can get back into a regular routine for the brace.

Troublesome chairs

Dancer Girl is back from camp.  Back from her week off from the brace.  It was probably the best week at camp she has had yet and I am so happy it worked out that way.

Putting the brace back on today was rough.

But she did it.

She had it off all week so we decided to have her wear it to church this morning.  (She has rarely had to wear it to church because we can usually take that time out of the 6 hours she can have off a day).

We ran into problems with the chairs.  They look a bit like the ones in the photo.  At first glance it would seem OK because they are padded.

               The problem was the gap at the top.

Dancer Girls' brace hits right in that gap. So when she leans back her brace gets wedged in there and pushes it into uncomfortable positions.  She was in a fair amount pain just sitting.

I eventually figured out to put my arm around her in between her back & the chair right at the point of the gap to prevent the brace from slipping in, but that was not entirely comfortable for me.  Now my arm was being squeezed by the brace and the chair!  It seemed a small thing though compared to wearing a brace so we went with it.

Still, it makes the idea of wearing the brace to church a bit more difficult unless we can figure out a solution that doesn't draw too much attention to her - maybe bring a pillow or find a different chair.

Who knew a simple chair could cause so much pain?

Going Solo

Dancer Girl has decided she would like to perform a solo dance at competition next year.  We are thrilled as this is a big step of confidence for her.  The studio director is very encouraging and is happy to help her reach this goal and will be working with her on the routine.

She was wanting to choose a song from her scoliosis playlist (see our Songs of Hope and Encouragement post) and is leaning towards a contemporary/lyrical style dance.  While she had a few top choices she wasn't quite feeling the pull toward any of them for a routine right now.

Then we found it...

             an acoustic version of Natasha Bedingfield's "Unwritten" (great song!)
             performed by Boyce Avenue featuring Diamond White (terrific arrangement).

You can see their youtube video version by clicking here.

The song is about reaching out and grabbing opportunities, making the most of the rest of your life, writing your own story, taking chances and pushing yourself, finding hope... that all resonated with Dancer Girl and she had found her song!

I can't wait to see how the dance unfolds!!

* * * * * * * *

If anyone is wondering what Dancer Girl's short list was for solo songs before we found this version of "Unwritten" it included:

Britt Nicole's "Still That Girl"
Britt Nicole's "The Sun Is Rising"
Carly Rose Sonenclar's "Somewhere Over the Rainbow"
Meredith Andrews' "You're Not Alone"

At camp without the Boston brace

Dancer Girl is away at camp in New Hampshire this week WITHOUT HER BRACE!

She is thrilled to get the break from it for a few days and be able to fully enjoy the camp experience.

Her back doctor said that because the correction in the brace is so significant (50%!) he thought she could go without it for the week.

The activities at camp would make it hard to wear much during the day anyway and nights are short so it would be good for her to get some real sleep if possible. That hasn't been happening consistently in the brace and camp beds are not going to make it any easier!

She was thrilled to meet her counselor who is also tall - "finally I am not taller than my counselor"! - and who understands the frustrations of being the tallest in the group.

It gets tiring to hear people exclaim "you are so tall!" everywhere you go.  Not that people mean anything negative by it, it is just an observation and it is true, but it gets tiring nonetheless.

The counselor also seemed to have an understanding of scoliosis. It wasn't clear to me at drop-off if she has dealt with it herself or is just aware of it on some level but still, this was encouraging for Dancer Girl too.

We are looking forward to hearing how camp week went when we pick her up on Saturday and are praying that her back will not cause her too much pain during her time there.

Sunburns and the brace

Today Dancer Girl was at the beach for most of the day with the youth group.  It was lots of fun but she came home with a horrible sunburn covering a big percentage of her body.  She is literally glowing and radiating heat as she sits covered with aloe vera and wet cloths all over to cool herself down.

Painful lesson learned on the need to reapply sunscreen at the beach...

She can hardly have anything touch her skin so I can't see how we can expect her to wear her brace to bed tonight.  And possibly not for most of tomorrow...

On Vacation With a Boston Brace

Our family recently spent a week in a cabin on a lake up in New Hampshire.  It was wonderfully relaxing with no set schedule.  We spent the days in canoes & kayaks or on inflatable rafts in the water. A few tried some swimming but the water was COLD!

We rode our bikes, found some great ice cream, and took a day trip to Gunstock Mountain to take in their high ropes course and zip lines. We had too many s'mores for too many nights in a row.

The hard part was figuring out how the brace fit into all of this activity.

Because things changed day to day, hour to hour, Dancer Girl was in & out of it much more than usual which got tiring for her emotionally.

She also found it very difficult to sleep on the beds in the cabin while wearing the brace even though we brought some of her extra pillows, and her bedroom was hot.

While we tried to keep it on as much as possible I found it harder to enforce on vacation and we almost certainly never reached the 18 hour per day goal.

It was our first week of summer vacation at the time and so it was hard to figure out a new routine. Now I think we have settled into one, more or less, but that will change as camps and vacations come up over the next few weeks.

For this vacation we drove to our destination but there is a trip involving a flight coming up at the end of the summer.  Travel by air with the brace will be a new adventure...

A brace-free day

Recently Dancer Girl turned 13 - she is officially a teenager!

Her one request for her birthday was to be given a full day without her brace.

We were happy to oblige.

She has been so good about pushing through the rough days and her doctor has said she can have a whole week off for summer camp (yay!) so we figured one day would be alright.

She was so happy to sleep brace-free and enjoy a full 24 hour day without the brace.  It turned into more than 24 hours with the brace free nights but she was good about getting as many hours in as possible before and after her birthday so in the end we think it worked out just fine.

How Much Longer...

A year seems like an eternity in a Boston brace.  

Dancer Girl has made it through four months of her "about a year" time in her brace.

Four long months.

While her attitude is generally very good, even with bits of humor now and then, she also has her moments of sadness and tears.

We had one of those the other day.  Well, a couple of days in a row really.

It is hard to do this day in and day out - being physically restricted and forced to sit or stand a certain way, unable to do simple things easily.

And the heat of the summer is looming.

The tears often come at night with "how long do I have to wear this" or "I am so sick of this stupid thing" or "I wish this would all just go away"...

Me too.  

I wish I could do it for her.  Take the frustration and pain in her place.  But I can't.

And, I can't really answer her question about how much longer with any degree of certainty.  There are too many variables.  Maybe it will be a year.  Maybe less, but maybe more...

So, sometimes we cry together.  And give each other hugs.  And pray together. And figure out how to get her the most time out of her brace while still maintaining her 18 hour goal.

We are a third of the way through "about a year" and soon it will be halfway, then almost there.  I pray that the doctor is right in his estimates about the year and that Dancer Girl will know she has the support of so many who love her as she works her way through this difficult time.

She has already grown up so much as a result and it is inspiring to see her face this challenge head-on, even as there are tears.

I know there are many in this world who are going through a lot worse than Dancer Girl is facing, but when this is right now day after day it is naturally what consumes our thoughts and our family plans. We are thankful for so much that she can still do - especially dance - and know she will come out on the other side with grace.

Summer Clothes for the Boston Brace

Summer is on it's way!  Today it is near 80 for the 3rd day in a row!  Not entirely typical for New England in May but we are certainly enjoying it!

We bought a few sleeveless summer items for Dancer Girl recently, from Kohl's and H & M.  More are likely on their way as we figure out just what will work best for the warmer weather.



The first is a summer dress from H & M.  It is black with tiny white flecks.  The waist is a thin elastic which provides some fullness as well as a waistline.  It hides the brace lines beautifully because it is dark, has a pattern, and it isn't tight fitting.  It would also look cute with a white or black cropped sweater, or even a denim jacket.  Dancer Girl is wearing a black Sugar Lips seamless tank under the brace.






The second is also from H & M.  it is a flowing tank top, black with small white zigzag stripes.  The pattern hides brace lines amazingly well and the fabric is nice and light. She is wearing the same black tank under her brace for this one.  It looks good with jeans, shorts, or a skirt.  (The jeans in this photo are from Kohl's).








The next three outfits are all from Kohl's.  We found a pretty, flouncy sort of tank top but the back is too revealing for the brace (it has lace and almost a racer back style). BUT, by putting this fun white denim vest jacket over top she found she can wear it with the brace. She was very happy.



This vest is likely going to be a popular item to cover up brace strap lines on days where another layer won't cause her to wilt.






This next one is a very pretty, almost sheer fabric. Dancer Girl is wearing a Sugar Lips seamless white tank under it in this photo but you could also go for one that is more off-white to match the lace.  Because of the delicate fabric she is also wearing another tank/cami over the brace.

The fabric flows so it hides the brace even though it is almost sheer and a light color.  It isn't as concealing as darker colors might be but she is happy enough with it.  The top did come in darker colors (orange and navy blue I think) but this was her favorite.





This last one looks like two tops but it is just one - the layers are attached along the shoulder seam. It is a lightweight fabric and the colors & design do a great job of hiding brace lines.


We know the hot summer days could prove to be rough, but we are on our way to being ready.  Dancer Girl still needs more shorts - she only has one pair right now that fit over her brace!!

My Back is Sore

Again... or, still... not sure which it is.

Scoliosis means fairly constant pain or discomfort. Some people probably have it worse than Dancer Girl, some less.  But, there seems to be a fairly constant level of it.

Massage helps.

     Muscle rub ointment helps.

          Exercises help. (Get the right ones from a PT)

               Heat helps.

                    Medicine helps.


But none of it is convenient and it only helps for a while.

It seems like Dancer Girl's general back pain is often better while wearing the brace, but it is also uncomfortable.  Especially at night.  She wakes up almost every morning with some sort of pain or discomfort from how the brace has been positioned overnight.  Sometimes a one hour break from the brace helps, but not always.

Scoliosis isn't stopping her from doing any of her favorite activities - dance, basketball, hanging out with friends, playing outside - but it does change how some of that is done.  And some of it results in additional back pain that we are learning to anticipate and manage.

Every day is a new learning experience as we juggle life with the brace.

          But we are doing it.

                    Together.