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.

En Pointe with Scoliosis

Today Dancer Girl got her first pair of pointe shoes.

She is SO excited.

We got the OK from her back doctor first, and have decided to do private lessons over the summer to see if there are any scoliosis-related issues before she takes the official class in the fall.  The director of her dance studio will provide the lessons herself to monitor Dancer Girl's progress and make sure she is ready to go when classes start up again.

At the fitting the person helping us said Dancer Girl has very strong feet. She also tried to give her shoes that will help provide as much stability as possible to aid in keeping her back properly aligned.  She was very helpful, for which I was very grateful.

We are feeling good about this at the moment but are also a little apprehensive. There are differing opinions about the wisdom of pointe for girls with scoliosis.  Some say it does more harm than it is worth, others point out that many dancers with scoliosis do just fine en pointe with no additional damage to their backs.  We will just keep a close eye on things and reassess the wisdom of it should anything seem to be moving in the wrong direction.

There is something very exciting though about watching her stand en pointe for the first time!!  We need to be careful to balance that excitement and thrill with the reality of the scoliosis and make the wise choices as life throws us curves.

(Our side bar has some links to other sites that talk about dancing with scoliosis if you are interested in more information about this topic).

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.