Tuesday, 21 October 2014

Scoliosis - back brace

So here I am again with another scoliosis update and a bit of a reality check.

The wearing of her back brace has been part of everyday life for Sibs now for a month or so.

As much as she had been questioning for a few weeks when the brace would be ready, there was still some trepidation as we finally got the call to tell us to go for the fitting.

After school one afternoon we drove to the hospital, parked outside the clinic and about 30 minutes later walked away with the contraption in a bag. That was the easy part.

Gary (who had made brace number 6230, especially for Sibs) encouraged her to come to the fitting appointment with all her questions. So we knew as much as we thought we needed to know by the time we left the clinic.

Which in hindsight was probably a little naive!

The photo shows Sibs wearing the brace over her t-shirt. It's actually designed to be worn under her clothes. She does however need to wear a singlet/vest underneath so that there is some clothing between skin and brace.

Here is the first challenge. Queensland has a sub tropical climate....it's hot here! Even in Springtime there have been days when it's been in the mid twenties. When you start layering tight fitting clothes, then foam and a hard plastic and then a top layer...well, it's not the most comfortable of things.

Sibs has done so ridiculously well to cope with this. She really wants the brace to work and took to heart what the doctors told her about compliance being the key factor in the success of the treatment. She documents every day how many hours she is wearing it and has built up to the expected 23 hours in what I think is no time at all. She decided one evening that she was going to wear it overnight and that was it - it was worn! There has been no pressure just an expectation that she tried to build up the hours in a sensible way.

It was all going great until yesterday. Yesterday was a pupil free day here - thank goodness. Sibs arrived back from her school trip to Canberra and Sydney on Friday night and then on Saturday was straight down to the theatre to take part in a dancing performance. We needed yesterday to rest and catch up. However much I heard "I am NOT tired" she was!

Yesterday morning there was a 'moment'.

None of her clothes seemed to fit....everything was too tight, too clingy to the brace, too see-through and wrong! T-shirt after t-shirt was thrown on the floor in frustration!

It's the only time I have heard her say that she didn't want to wear her brace.

We had already had the conversation that at times I might have to be the tough parent so she knew what was coming.
In the best way I could, I explained that she had some choices - take a moment and then chin up, find the best thing to wear and get on with it, or wallow in self pity.

I felt for her.....so much,  and I couldn't really make it better.

I left her to have her cry on the bed and I went and had my cry downstairs!

About ten minutes later she was dressed and we had the biggest cuddle, a team cry, and a plan to go shopping!

Sibs has not tried to hide the fact that she has a back brace and is very comfortable in front of her friends and family, but like most twelve year old girls, she is conscious of what she wears and how she looks. We have needed to tread the difficult line between child and adult clothes in order to get a fit that is sympathetic to the brace. It's not an easy task. I was almost tempted to get the sewing machine out, but my sewing repertoire stops at cushion covers, curtains and the odd fancy dress outfit!

In the end we did end up having a lovely day out yesterday with a yum cha lunch and then we managed to find a few summer outfits. We have discovered merino wool singlets/vests to wear under her brace that I hope will help (It took some convincing Sibs that wool could help keep her cool as well as warm!)

So last night her wardrobe was cleared out and even though it's looking rather bare at least everything in there is wearable.

I am so grateful for the lovely supportive and caring comments texts and messages that have come my way since I first posted about Sibs's scoliosis.

We have had quite a bit of time to think things through here as this is something that has been on our agenda for quite a few months now. I do realise however, that for a lot of my friends and family this blog was the first time that I had shared any of this.

I probably do have a natural positive attitude to most things but I will admit that this was extremely confronting at first. I feel fortunate that our previous medical history with Sibs has been next to zero. There was a case of chicken pox at 2 year old and a few runny noses during the first few Yorkshire Winters but that's about it!

So being faced with an uncertainty about a progressive condition certainly did stop me in my tracks.

Goodness knows how many times I remind myself that it could be a lot worse....a lot worse.
That's why I think that on occsion I may possibly come across as being a little dismissive. I don't mean to be, as obviously Sibs's health and well being is of absolute priority to me. But it all needs to be put into perspective.

So if you've asked how she's doing and I've replied "fine", it's because in the main she is fine. As much as is possible, she's just taking things in her stride, and I couldn't be prouder of her!

We're off for a check up this afternoon and she is rather excited to be showing Gary how many hours she has been wearing her brace. He may need to sit through pages of notes detailing every single time it's put on and taken off. Maybe I should have booked a double appointment!

Gary did indeed read through her detailed notes, bless him.  He won't have realised how important that was to her - It was lovely to watch her proud face.

Some new clothes got an outing too!
(Yes, she is wearing her back brace)

Then to finish off we called back at The Three Monkeys in West End and shared a slice of marshmallow and chocolate cake that made us so full that we don't want any tea!

5 Comments and thoughts:

  1. Ma Sibs yn swnio'n hynod o ddewr a grown-up. Wi ddim yn gallu dychmygu pa mor anodd ma fe i ti - a hi - ond diolch am rannu, a phob lwc gyda'r triniaeth xxx

    1. Diolch x
      Ar y cyfan ma pethe yn mynd yn iawn a ma hi'n ymdopi'n dda. O'n i eisie recordio bod na elfen o realiti tu ol pan ma pethe ddim cweit mor hawdd. Gobeithio wneiff y dillad newydd y gwahaniaeth.

  2. Good information. I am using knee brace for my knee pain. thanks

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  4. Thank you so much for posting. My daughter is in a brace too. So nice to know she's not alone. Time for another visit to Gary, and she's hit me up for mug of chocolate afterwards...