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!

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.

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?

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...

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.

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.

Sleeping in a Boston Brace

Sleeping in the Boston brace has proven to be harder for Dancer Girl than we anticipated.

We certainly expected it to take some time to adjust, considering the brace is made of hard, inflexible material. But, so many posts from other users indicated that they got used to it fairly quickly (within days and weeks) so we thought it would go that way for us as well.

It didn't.

Dancer Girl is prone to restless sleep anyway.  Wearing the brace didn't help. Edges dug into her no matter which way she lay down.

Once she got to the point of needing to wear it at night to get in her 18 hours things didn't go well. She couldn't fall asleep, or, if she did manage to fall asleep she didn't stay that way.  After several hours of trying, the brace would come off in the middle of the night but the damage had been done.  Dancer Girl was tired.  All the time.

She had lots of pillows all over her bed, tried different positions, even stuffed small fuzzy socks under her brace... nothing was working.

At her check up we talked to the orthotist who added some extra foam in certain areas (along the back edge for example) and shaved down others a bit.  This worked somewhat, but not entirely.

The thing that seemed to finally work in the end was something we found on a forum post - after many, many searches.

THE TRICK: She started wearing it a bit loosely at night.  This allowed for some movement to find a more comfortable position.  She has gradually been tightening it and is now up to her full level and on most nights she sleeps through.

So, in the end, a bit of extra foam (at the bottom, back edge in particular), and the shaving down of some edges, combined with wearing it loosely at first is what has done the trick.  She also still uses pillows to provide some support.

But it has taken three full months.


It seems that for most girls, getting used to wearing it at night isn't all that difficult. Hopefully you are one of those cases!

But if not, try wearing it a bit loosely at first, gradually working your way up to making it at full tightness.

Also, be sure to talk to the orthotist.  They may be able to adjust the brace just a bit in order to make a difference for you at night.

Be assured that sleep will come.

In the beginning...

We are still near the beginning of our scoliosis adventure and learning how to adjust.  I have included a brief summary to date below, but will probably blog about specific parts of the beginnings in more detail later.

A brief history: About a year ago was our daughter's first visit with the orthopedic specialist following her routine check-up with her pediatrician.  She was almost 12 at the time, growing very fast, and her doctor wanted to be on top of things.

The first visit showed a curve of about 21 degrees in her lower back.  The doctor decided to see her again in four months to check if there was any further progression.  Four months later it had progressed to about 24 degrees, borderline for him for needing a brace. In the meantime he ordered some PT to deal with back pain.

In November we went back for more x-rays.  This time the curve was 28 degrees and he decided she needed a Boston brace.   Dancer Girl held off tears until after the appointment but then we both had a good cry together.

Getting the brace: In January of this year we got the brace.  It was a long, emotional day.  Dancer Girl handled it all so well, even being able to find some humor in things, but I know it was hard for her. She has to wear it for 18 hours a day and we are now up to that point.  It took longer than we expected to adjust and she is still having a hard time at night.

Our recent check-up at two months went very well.  In her brace the curve is at 14 degrees - a 50% correction!  The doctor was very pleased with this.  A few minor adjustments were made to padding, and a little bit was shaved off here and there to try and make it more comfortable.

Life as it is now: After about two months with the brace Dancer Girl averages about 14-15 hours.  Some days she gets the 18 hour goal and others only about half of that.  She dances a lot during the week and plays basketball as well.  So, on days where she has both activities the brace was off for quite a few hours.  Making it through the night is still hard for her so we lose hours if it comes off at night.

She has moments of tears and frustration but has so far had an incredibly positive, accepting attitude about it.  She realizes she needs it and with the recent appointment can now visually see how it is helping.  We expect her to wear it for about a year or so depending on when she actually stops growing and her bones develop fully.

This is where we are at right now... we plan to post regularly and really want this to be a helpful place for others dealing with scoliosis.  Dancer Girl isn't ready to blog herself, or be identified in the posts (she is a very shy, private person) but that day may come...