Tuesday, 24 May 2016

Scoliosis - 18 months on

I'm a little overdue with this scoliosis update but as they say - better late than never. 

Sibs has had a couple of appointments recently with the first one being an MRI scan. She is used to these now and the experience doesn't faze her in the slightest. She is becoming quite the expert in remembering to wear the right clothes with no metal bits which leads me onto quite a funny little tale...

Before I get to that, I'll just record the procedure for the MRI appointment. The all important job of choosing a movie is first on the list and she always hovers between the familiar (as she knows she might not get to the ending) and the opportunity to watch something different. 

There was a younger child being scanned earlier and I'm not sure if Sibs was amused at the fact they kept the donut screen in front of the machine or not?  I personally thought it looked a little scary from my side of the room! (Note for my mother - they are not dirty socks - they are white and have grey heels and toe parts!)

Once the scan was sorted it was then onto some measurements that the research team then log for their findings. Sibs's height growth has slowed down during the last 6 months. This wasn't a surprise as I can see for myself that she hasn't changed as much as she did in the few months before the last scan. I had noticed that her feet had stopped growing too and there hadn't been as frequent a cry of "nothing fits" for a while.

One of the researchers also takes photos of various angles of Sibs's back and torso. This is where the funny story comes in. 

I was sitting watching the photography from a little distance and concentrating on the researcher telling us that these photographs could be used in a study paper. Being a typical mother I have to admit I checked to see what crop top Sibs was wearing. Hmm, I don't recall that particular one Sibs....!

It turns out that from the extensive supply of crop tops that my thirteen year old possesses, she decided that on the day that she gets to show the medics (and now possibly the world?) she would wear a home made one...wait for it...made from a pair of knickers!! I'll let you work out the how.

I was a mixture of proud and mortified! I couldn't argue with the fact that it ensured that she didn't have any metal bits though.

As you can see from the photo above when she is standing upright her scoliosis is hardly noticeable and her shoulders and waistline are pretty even.
It is only as she begins to lean forwards that the extent of the curve becomes clear. I think I have mentioned this before but I haven't recorded any clear photos. This was the way that it was first noticed and what prompted the start of the interventions.

There is also some very slight left rib protrusion when she is lying flat on her back. 

The research team will continue to track and record the results of the MRI and various measurements in order to try and understand the complexity of the condition and hopefully find some answers for treating and even preventing future cases.

Then a couple of weeks later it was back to see the spinal surgeon for a check up. Once again the routine is to get to the clinic, pick up some paperwork and then get up to date x-rays. 

Trying to juggle work and school pick up meant that we hit the South Bank traffic and we cut it very fine to make the 4.15pm appointment.  The two bits of good news were that we made it in time and then the magazines in the waiting area had been updated!

After studying the x-rays and measuring Sibs's back Dr A came to the conclusion that the degree of the curve of her scoliosis is increasing. Not such great news....

Because she had been excited about the fact that her growth was slowing down, Sibs had began to hope that the brace would no longer be needed. Also during the very first meeting with the surgeon there was a discussion about wearing the brace for about 18 months.

Telling this to a girl that counts down everything (curse those iphone apps!) then in her calculations that would mean that time was up just about now.

I had been casually talking through different outcomes and options with her and as much as the conversations were heard, I'm not sure how much she really wanted to believe. In her mind, March 2016 was going to be her last month of wearing her brace.

So back to the news about the increase. We've been here before - her last appointment showed a similar story. The increase is small and still keeps her in a bracket that is under the recommended degree for surgery. Sibs's curve is at 37% and surgery is recommended from 40% upwards. Interestingly she is back where she started in terms of degree of curvature. In one way that is a reassuring thing. It decreased at first when she had a bit of a growth spurt and even though it has gradually crept back it probably means that by wearing her brace she has prevented the curve moving into the 40+%. If she had opted not to persevere then the chances are high that she would now be facing back surgery.

Anyhow....she rallied and now has another countdown! Her next appointment is July but she's set her expectation of stopping wearing her brace for October.

I continue to say the same thing - I am so incredibly proud of her. Her resilience is pretty amazing. She picks herself up and onwards she goes.

Sibs has given her approval for content and photos in this post.

Friday, 20 May 2016


I've been staring at this screen for a long time.
Starting to type sentences and then hitting delete.

I've been back and forth to this 'new post' page on my blog umpteen times over the last few weeks doing the same. Two or three sentences in and then delete.....

Why do I sometimes need to record things and then other times nothing I write feels right?

When I look back over the last few months, lots of things have happened.

  • There's been a month of a family visit with days out and a little holiday up the coast.
  • Sibs and I got the best upgrade at a Madonna concert in March and had a fabulous night out. She's such a great little concert buddy!
  • We were super busy with a huge production of Hairspray at the Brisbane Convention and Exhibition Centre in April where 14,000 people came to watch the show over a weekend.
  • I've started to organise a big holiday for the end of the year and I'm already getting excited and am counting the days.
  • Sibs has had a few hospital appointments and check ups with some updates on her scoliosis. (I will update on that soon)
  • I'm back singing with a choir and it's hard work but so much fun at the same time.
  • We've had a great house guest from the UK staying with us and she was a breath of fresh air.
  • I'm still in the decision stage about my health options....(I can be such a procrastinator)

Lots of bloggable and recordable moments...

But I'm just too tired.

Life is hurtling by and I'm just about holding on. Gosh, I sound like such a drama queen! Maybe I should just delete that last sentence too??

Each week I mentally plan things for the days ahead. I make lists and then I prioritise. I've even been known to prioritise within my priority list but it's funny how sorting out the study cupboards  never quite makes it onto any priority list...ever!
Work days are generally accounted for and on my days off I go through a lot of the boring and mundane things like grocery shopping and meal planning and cleaning and cooking and admin stuff and medical appointments. I have my regular yoga class on one of these days off and once in a blue moon I occasionally throw in a 'me' treat.

I know I'm just too tired when this kind of thing happens. -  I'm wandering around Coles aimlessly comparing the prices of brown rice packets when my phone beeps and tells me I have a message. I get as far as the frozen food section before I decide to play the message and it's to tell me (in a lovely way) that I was expected forty five minutes ago for an appointment for a facial! Now granted these appointments are rare but that's even more  reason that I would have been looking forward to it!

I also know that I'm too tired when lots of people are asking if I'm OK. Now that's lovely and caring but also a bit disconcerting!

As I'm typing away here I think I know some of the answer. I've just gone back and read my last post. The one where I thought about self care. The one where I made a bit of a promise with myself that I think I've broken....

I don't know why I might believe that I'm so indispensable! The world will not stop spinning if I don't contribute for a while.

I think it might just be time for that new kind of normal...

I'll sleep on it.