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!

Six months post brace

A few weeks ago Dancer Girl had a follow up appointment at the Schroth clinic.

She was a little nervous.

Not because of the clinic itself, but because she hadn't been particularly faithful in sticking to the plan they had laid out for her back program. She was very nervous that they would see some progression of the curve.

The last thing she wanted to hear was that she might need to go back into a brace.

It turns out the appointment was very positive.

There was no progression.

                     It was holding steady.

                                               Whew!

It also helped that all the staff there are so incredibly supportive.

The therapist had her walk through all the specific exercises again to make sure she was remembering them correctly. Together they chose the ones that seemed to work best and that Dancer Girl was most likely to commit to doing regularly. We worked out a plan to ease back into a regular routine and went away happy.

It appears Dancer Girl really has stopped growing. The exercises should help support her back, and if done correctly and routinely, could even result in some correction.

While this program is expensive we would recommend that it is considered as part of a program for scoliosis as you search for the best option for your back or your child's back. We were impressed by the research behind it, the staff are supportive at the clinic we used, the choice of strategies were clearly specific to Dancer Girl's curves, and it is entirely do-able once you are set up and in your routine.

It is a program for life. Hopefully one free of serious back pain, free of curve progression, with no more bracing required!

Life post-brace

Brace-free days...

At our last appointment with the back doctor Dancer Girl had another x-ray. She was a bit disappointed to find there has been some progression since coming out of the brace a couple of months prior. However, it was only 1 or 2 degrees and the doctor was not concerned. He felt it was due to settling that occurred once the back was free of the restrictions of the brace rather than any real progression of the curve.

He basically said she is done with seeing him regularly. We thanked him and told him that we hoped to never see him again (nothing personal - he's a great guy)! He totally understood the sentiment.  :)

Dancer Girl still has to deal with some back pain, although it is much less frequent and less painful than before bracing. Yay!

She also has daily Schroth exercises to do. These are specific to her back curves and were learned from a specialist (see previous posts for more information). She can select from a variety of ones but has to do some every day.

During the summer, when our schedule is less structured, this has proven more difficult than we expected. You would think with more free time there'd be more opportunity for these things but because every day is different it's hard to remember to fit them in.

Once the fall schedule kicks in we can get better at making sure they are fit into our regular routine. The goal is to keep progression from happening and to stabilize the back.

She is also finding that some of the clothes she bought to fit over her brace still work fine without the brace. Some of it is too big of course, especially the pants and shorts, but at least we can still use some of it. Nice for the budget!

We are so thankful to everyone who helped Dancer Girl through her brace-wearing days... her pediatrician, back doctor, physical therapists, Schroth therapists, other bloggers' helpful information and advice, family members, and friends.

What seemed at the time like a long road has had this chapter come to an end. We are hopeful that we have come to a place where her scoliosis can be managed well and not pose continued issues for her.

And she can still dance!!

Happy New Year!

We hope that everyone reading this finds peace and joy in the coming year, even as you are likely dealing with scoliosis and a back brace, or know someone who is. We know it can be difficult, frustrating, and sometimes physically painful, but we also know that you can come through it with grace and strength.

We are almost at the one year mark in the brace and are looking toward Dancer Girl being free of it this year, hopefully by the time the warm summer weather rolls around. But, nothing is certain yet so we take it one day at a time.

My prayer for Dancer Girl this year is that she will realize how strong she is, how much she has grown, and how much her friends & family love her.

My prayer for us is that we will realize the same - that Dancer Girl is growing up and is able to handle more than any of us may think, and that she is surrounded by wonderful people. For that I am truly thankful.

My prayer for those of you reading this who are struggling with scoliosis is that you will discover your strength and that you will be surrounded by loving, understanding people who will walk with you through this journey.

And, my prayer for those of you reading this who know someone with scoliosis is that you will know how to be supportive and encouraging in the pains and the triumphs in the coming year.

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.

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...

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.

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?

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...