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.

Redecorating the brace

The stickers and rub-ons lasted much longer than we expected (see previous post about decorating the brace) and Dancer Girl decided it was time to try something new.

We had tried Sharpie pens earlier but she wasn't happy with how the colors went on - too dull I think was the verdict. This time she decided to just go for black line drawings and skip the color.

Those of you who are fans of Hunger Games & Divergent books will recognize the icons she chose to try.  I think they turned out quite well!

We covered them with clear tape to see if that helped it last longer. The smudging is from the original drawing process - one of the problems with using any pen on the plastic brace is that it doesn't dry as quickly as on paper and smudges are hard to avoid.

Someone suggested trying crafting vinyl paper. It comes in a variety of colors with an adhesive back and can be cut into any shape you want so it might be a very nice option.  If anyone has tried it we would love to see photos!

Reduce those hours!

This morning Dancer Girl had a check-up with her back doctor.  They took an x-ray out of the brace (after having not been in it for about a day) to compare it to the pre-brace curve.

The goal of the brace is to slow or stop progression. (Correction out of the brace is a bonus if it happens but it is not actually expected).

Basically, the curve is holding steady to pre-brace levels at around 27 degrees. Coupled with the fact that Dancer Girl has essentially stopped growing this was great news and has allowed her to reduce her hours in the brace. Yay!

She can now wear it "only at night" or for about 10-12 hours a day if she prefers the daytime. She does.  Sleeping in it has never become fully comfortable. She wasn't a great sleeper before the brace. Many girls get used to sleeping in it, some fairly quickly it seems, but Dancer Girl has never really managed it.

So there were tears of joy as she learned that the brace is doing its job, she can reduce her hours, and that she will go back in 6 months for another out of brace x-ray to see if she can be rid of it altogether at that point!

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.

Songs of Hope and Encouragement, part 2

We have added to our original list of songs that bring us hope and encouragement through their lyrics. Songs are chosen because they might be...

- a song of friendship
- a song of finding hope in hard times
- a song encouraging you to push past difficulties in life
- a song of faith
- a song of turning to God for strength

The first one is the song Dancer Girl has chosen to use for her very first competition solo this year. The rest are either recent finds or rediscoveries of old favorites...


We hope you find that some of these speak to you, offering encouragement in some small way.

"Unwritten"                                    Boyce Avenue with Diamond White  
"A Beautiful Life"                          MIKESCHAIR                            
"Home"                                          Phillip Phillips
"Do Life Big"                                 Jamie Grace         
"Firework"                                      Katy Perry
"Where I Belong"                           Jenny Simmons                           
"Glorious Unfolding"                     Steven Curtis Chapman                
"He Knows My Name"                 Francesca Batistelli                      
"You"                                             Britt Nicole                                  
"Hands of God"                              Francesca Batistelli       
"Fighter"                                         Jamie Grace                                  
"Just Be Held"                                Casting Crowns                           
"Run to Jesus"                                Francesca Batistelli                      
"I Look to You"                             Whitney Houston                          

Scoliosis International

One very interesting thing about doing this blog is that we can see where people are finding our site from in the stats section.  It turns out the search for information about scoliosis is an international activity.

We have had searches find our site from 20 different countries all over the world just in the past month! (Make that 21 - just added Poland to the list!).

Australia    United Kingdom

Singapore             Oman             Serbia

India            Germany            Cyprus

Canada                  Finland      Malaysia

Philippines              France          Honk Kong

Turkey            The Netherlands             Romania

Saudi Arabia            Taiwan

Poland               United States

By far, the most hits have come from the US, with Finland and Romania coming in 2nd and 3rd respectively. Canada, Saudi Arabia, Cyprus, and the Netherlands are all close together in 4th, 5th, 6th, & 7th with the rest getting only two or three hits per country.

The most popular posts appear to be about fashion - what to wear both over and under the brace. The next most popular ones seem to be those related to dancing with scoliosis.

We are pleased that our blog makes its way onto the list of many blogs out there that offer some great advice on these topics and share personal experiences with others to help them through this part of their lives.

I know we have found a number of very helpful sites (our sidebar links you to some of them) and are thankful to those who posted and have helped Dancer Girl deal with some of the daily pains and logistics of wearing the brace.

The Boston brace - our basic info

Some friends of ours recently commented that they are never sure when Dancer Girl is wearing her brace and couldn't think of a time when they noticed her in it.  This means she has managed to find clothes that help conceal it.  But, it also means that many of our friends have very little idea about just what it is Dancer Girl is trying to hide because they have never seen it!

Each brace will look a little different depending on the individual's bracing needs, but the basic frame of a Boston brace is similar from brace to brace.  It is essentially a solid plastic body that wraps around the torso. Cut-out areas are created to allow for relief of pressure and to create some give in order to be able to get it on & off.  Often those cut outs are covered with a stretchy fabric to provide some support.

Dancer Girl's goes up into her armpit and down below the hip on one side.  The other side is essentially at her hip and stops below her armpit.  It falls in the mid-pocket area in the back so when she sits down it is just above the chair. Similarly in the front it sits just above her lap when she is seated.

The front is fairly smooth with a few contoured lines that could produce a small bump in a tight fitting top.  The back though is the tricky part to hide.  There are three large velcro straps that do not lie nice & flat, especially after repeated use.

She wears a seamless tank top underneath since seams can create areas of skin irritation and then another fitted tank over it to keep the straps as flat as possible and protect her clothing from the velcro.  We have a number of posts about various clothing items she has found that work well over the brace. If you are curios, just click on the Fashion tab at the top of the page, or click on a photo on the left side bar.

Cute tops over the brace

Fall is here and so different clothes are in order.  Most of what Dancer Girl wore last year still fits although she has outgrown some of it so needed a couple of replacements. The trick with this time of year is that the temperatures can change a lot from morning to afternoon to evening so lightweight long sleeves, or 3/4 length, and layers are alway good.

This first top we found at T J Max and is a fun, casual hoodie style that is not too heavy.  The pattern really hides the brace lines in the front and back but the style still retains some figure to it's form.  It hangs down past the hips and the shirt underneath and the patterns on the back pockets help hide any brace lines on the pants.

The second one is also lightweight and we found this at Nordstrom's Rack.  It is a looser fit and a little shorter but not quite a crop top. Dancer Girl can get a casual sort of style with a tank over the brace without revealing any of the brace. Because of the loose fit it hangs in the back in such as way as to hide the brace lines.

She is wearing a Sugar Lips seamless tank under her brace with both tops.  She is also wearing Everyday camisole from Kohl's over the brace to protect her clothing from the velcro straps and give the layered look.  That exact style is no longer available but this is similar, Women's Apt. 9 Essential Seamless Camisole, and is seamless so might work under the brace for some.

She actually fits the top of the brace in between the camisole and the shelf bra which ends up hiding the part of the brace that fits under her arm as well as providing a bit of protection for her underarm - very clever, I thought. These come in all sorts of colors and are often on sale so stock up when you have the chance!

Also, check out the latest fashion posts on "c-ing curves differently"

- she's got some great ideas for clothes to wear over a brace!

Keep Dancing

Along with classes beginning for school, dance classes start up this week as well.  Dancer Girl and Dancer Sister are both very excited.

Dancer Girl is adding pointe to her schedule, following some summer introductory private lessons.  It has been going well and she is thrilled that there doesn't seem to be any additional stress on her back or increased discomfort due to pointe work.

We have spread out her classes over more days to reduce the amount of time she is in dance class each day.  This means more driving for me but less stress on her back.  For now it is a good compromise.  I may feel differently in the middle of winter when I am driving to dance multiple times a week in the snow!!

Classes for the year include: ballet, pointe, contemporary, modern, lyrical, jazz, and dance team.  She is also continuing to work on her solo for competition this year, and may join two friends for a trio competition routine.  Lessons for those will be fit in periodically throughout the year.

(Dancer Sister is taking ballet, lyrical, contemporary, modern, tap, and dance team, as well as working on a solo for competition herself - lots of dance happening throughout the week!!).

The countdown to dance begins!

School days and the brace

Tomorrow classes start up in full force.

We are homeschooling again this year and once a week Dancer Girl & her Dancer Sister take in a full day's worth of classes designed for homeschoolers.  They are very excited to get back into things and are looking forward to seeing all their friends again.

(An aside: The difference between this and traditional school, for those who are curious, is that these classes are very small at only 8-12 kids, only meet once a week for middle school, and the tutors see themselves as coming alongside families rather taking charge of the education.  It ends up being a nice mix of both classroom and independent learning for our homeschool program - the best of both worlds really, since there is value in both group instruction and personalized learning experiences).


Last January, when she first got the brace, Dancer Girl wore it each week during these classes.  She only told her tutors and a few select friends about it and I doubt most people knew she was in a Boston brace.  She has learned to hide it well.

It wasn't easy though - certain classroom chairs were very uncomfortable, the popular beanbag chairs were next to impossible to get in & out of gracefully, it became hotter as the summer approached so the outdoor lunch breaks were tiring, and she couldn't always fully participate in some of the more physically active classes.

This year she doesn't currently have any scheduled activities after her day of classes (which runs approximately 6 hours) so we are going to try to have her go without the brace for the day.

Once basketball starts up this will have to change, but for now she is thrilled to be able to have a brace-free 6-hour day of class!

And I am thrilled to be able to grant her that experience while still maintaining the 18 hour goal.

Same old thing

Today was a follow up appointment with the back doctor.

Dancer Girl was nervous about the unknown - would he make her wear the brace more often, how much longer will she have to wear it, what if her back is getting worse...


Before the appointment we talked through the possibilities: needing to wear it more often, keep it going as is, wearing it for fewer hours each day or only at night, not needing it anymore...

In the end he told her to keep doing what she is doing.

They didn't do an x-ray because he doesn't like to do them too often for kids & teens - every other time unless something unexpected comes up.  Since the external measurements were holding steady and she is not in any additional pain and the brace still fits he opted for no x-ray today and told her to just keep wearing it as much as she can each day.

She will go back in about 4 months for the x-ray out of brace to compare it to pre-brace.  The hope is that it will be good news and she will be able to reduce her hours in the brace, eventually being able to get out of it completely within 4-5 months following that December appointment.

Time will tell, but for now she is relieved that it isn't getting worse.  So are we... relived and thankful. We will keep praying that things continue to progress as planned over the next few months.

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.

Out of town

Soon we will be heading out of town for our first trial of wearing the brace on a flight.

The plan is to have it in a carry-on bag through security, then Dancer Girl will put it on to board the plane (so we don't have too many carry on items) and see how it goes in flight.

She plans to bring a small pillow to help with positioning on the flight but if the seats prove to be unbearably uncomfortable she may opt to take the brace off.  As long as she wears it the rest of the day she could get away with not wearing it on our flights.  But, wearing it in flight will give her some relief time from it when we first arrive at our destination.

We are flying to visit family so the initial moments of arrival will involve plenty of greetings and lots of hugging which will be nicer for Dancer Girl if she is not in the brace.  (See our "Can I have a Real Hug?" post).

We will update the blog on our return - (there will be fewer posts for a couple of weeks while we are away unless we get some good computer access time).

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...

More Summer Clothes for the Boston Brace

We have now had a few days of really warm weather and are looking forward to many more.  Dancer Girl is still able to handle layers with her Boston Brace although there have been a few days where she ends up fairly hot.  We are looking for, and starting to find, some options for getting rid of some of the layers she usually prefers while still maintaining optimal brace coverage.




This short-sleeved dress we actually found at TJ Maxx!  It is a knit fabric with a subtle stripe design and mixed weaves.

Dancer Girl is wearing it with leggings in this photo but you could easily go without for a cooler feel.

She also opted to wear a lightweight sweater overtop.


You could cover it up with a denim jacket for cool evenings and a more casual look.
















This next outfit works both with the denim jacket layer and without.


Dancer Girl likes the extra layer for more security in hiding the brace but it is not necessary as you can see in the photos.



These items were all found at Kohl's.











This is a fun, flowing, loose-fitting, pretty summer dress from Kohl's.  It comes with an attached slip/camisole layer so you could go without a cover over the brace if you want, if it doesn't snag the fabric.

Dancer Girl is wearing a cream colored Sugar Lips seamless tank under her brace and opted to go without an extra brace cover layer.  It worked well.

She started the day wearing the lightweight green shirt as a coverup along with some leggings.  But taking off the jacket/top also worked well and it was nice to have the option as the day warmed up. She wore this to church and I doubt anyone knew she had a brace on underneath and she got a number of comments on her cute outfit!