Monday, 23 March 2015

Scoliosis check up

A few people have been been asking about how Sibs is getting on with her back brace so I thought I would do a quick update on how things are going.

It's been about four months since the last consultant hospital visit and her starting to wear her brace so during the last couple of weeks Sibs has had a couple of check ups with the medical team looking after her scoliosis. 

The first was for an MRI scan. This is for the research study that she is participating in where medical researchers are looking at the differences in the spines of children with scoliosis and comparing them with those without. Sibs is photographed, her rib hump is measured and then she gets to choose a movie and lie in the MRI machine whilst it does its thing. 

Even though her spinal curve is classified as moderate to severe it is almost unnoticeable when she is standing upright. I know what I'm looking for so I can spot it when she has a swimsuit or a leotard on but generally speaking you would struggle to know she has scoliosis. When she leans over though it is quite obvious that the top right hand side of her back protrudes and the outline of her ribs is clearly more defined than the left side. Thankfully this does not bother her either cosmetically or more importantly in terms of pain. For that I'm very grateful. 

I can manage the odd moan about the brace being uncomfortable when it's a particularly hot day but having to manage chronic pain in a child must be one of the most heart wrenching of things. 

Whilst she was lying in the machine I took the opportunity to chat to one of the researchers about some of the developments with the research study. The initial results of this research sound pretty exciting. Some of the already published papers and conference presentations point to some ground breaking findings.  They are still interested in anyone who could help out as a participant so I'll just shamelessly plug the details here.

The MRI takes about and hour and a half and the staff at the hospital make it as pleasant as possible. They are very reassuring and gentle and Sibs even got a juice after she was done this time. I have to say she did look a little pale when she finished and I think the sugar hit from the apple juice was needed to bring a bit of colour back to her cheeks. 

It wasn't quite enough though and as will probably become a little bit of a treat and tradition we headed off for a hot chocolate before I dropped her back at school in time for morning break. It was a really warm Brisbane morning and maybe an iced chocolate would have been a better option but you just can't beat a Max Brenner Italian thick hot chocolate whatever the temperature.

A week after the MRI scan we were back again, this time after school for an x-ray and an appointment with the consultant surgeon.

The car park situation for the MRI appointment at 7.45am the week before was a little crazy and it took 25 minutes to find a park. It also cost an obscene amount as I managed to get to the pay machine 3 minutes into the next pay level! This time, the appointment was for 4.15pm and as I drove near to the clinic just before 4pm there was a spare on road metered spot. I decided to take it and find out how much I needed to feed the meter or if I needed to mortgage my house! As I fumbled with remembering my car registration the meter suddenly blinked and this wonderful message come up "Free to park after 4pm"
So guess what time we'll be making any future appointments?

The routine is that we book into the clinic with Dr A and then pick up the paperwork to go for a x-ray. We are now experienced in remembering to wear clothes with no metal bits and Sibs is happy to take charge and book herself in - well that is until it comes to paying!

It's pretty efficient and within no time we were back in the comfy waiting area reading celebrity gossipy magazines and rating the best dressed gowns from some award show.

Dr A also takes some measurements of Sibs's rib hump and then compares the results of the x rays. He noted that Sibs has grown a couple of centimetres and that her skeleton is maturing. The good news is that the curve has not progressed since the last appointment. This means that the brace is doing the job that it's designed to do. That's good right?
Well, in the world of scoliosis and back braces we apparently need excellent, not just good....
In a perfect world, the curve would have decreased, but you know what, that's ok - things are not getting worse so we can live with that.

During the first couple of months of wearing the brace her curve did decrease down to 32%. Now I remember that I was really impressed with this. However, once Sibs stops growing and consequently then stops wearing her brace there is an expectation for the curve to slightly swing back.  So obviously the lower the degree of the curve then the more chance that the swing back will not be severe enough to warrant more intervention.
Dr A thinks that Sibs's curve is now a little stubborn and suggested that she tightens the brace and also inserts another layer of padding in a particular spot to try and push the ribs in the right direction. We're onto it.

I have mentioned before that Sibs has always been very keen to comply with wearing her brace as much as possible.  She is quite wary of the possibility of surgery in the future and whilst this is is an option, at this stage it is not particularly likely if her curve can remain below 40%. (Fingers crossed)

So that's where we're up to.

We'll have another check up with the orthopaedic clinic in May and Dr A is happy to leave his next check up for six months until September.

Sibs continues to make me proud of the way she handles her scoliosis. For every tricky day there are a heap more good ones. She rarely complains and manages to just get on with things. Of course there are challenge, and we have to consider certain things when making some decisions but on the whole she just keeps on smiling.

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Monday, 2 March 2015

One Direction v Einaudi?

Firstly thank you for the lovely and supportive comments and messages after my last blog post that came to me via Facebook, texts, email, blogger and even a couple of phone calls. I am so glad to know that I'm not the only one feeling a bit wonky with things! 

When I write something that's a little more personal I do occasionally agonize about sharing. I wrote that last post in a little slot of time between the supermarket shop and waiting for Sibs to return from school. I didn't over think it as I can sometimes do, it was just a quick release.  I have many posts that once written never go any further than the drafts folder and this was almost one of them.  Then, for whatever reason I asked Sibs to read it as she was so involved in the content and with her approval I pressed publish.  I was quite taken aback with the big virtual hug that I felt - thank you, diolch.

So now back to something a little more frivolous and a little less soul sharing - a story for the memory bank.

A couple of Wednesdays ago I had a sort of double booking - I wanted to be in two places at the same time.

Let me tell you a bit more.

Some years ago friends back in the UK introduced me to the Italian pianist and composer Ludovico Einaudi.  Unfortunately I had never had the opportunity to hear him play live, so I was rather excited to find out he was coming to Brisbane and eagerly waited for the announcement of the date of his concert.  That date however seemed rather familiar....

Ah, yes, that would be the same night that 'One Direction' were in town. The night that Sibs had etched in her brain and on her calendar and that was on a countdown on her phone!

A part of me wanted to go and sit still in the quiet of QPAC Concert Hall and be mesmerised by Einaudi. Yet, I also wanted to be witness to the sheer joy that Sibs was bound to experience whilst she screamed her way through a few hours at Suncorp Stadium.

Could I choose the noise, the craziness, the hysteria over the brilliance of the Italian maestro?

I could possibly and probably have found a chaperon to take Sibs to Suncorp but I would have missed so much...
  • The excitement on the bus to the city where groups of girls and pairs of mothers and daughters were in various stages of anticipation.
  • The embarrassed giggles of my 12 year old when I pulled out some ham sandwiches from my bag. ( I had to sneakily eat one hidden under my seat as she was quite mortified!)
  • The funny "We love you Niall" that the two boys behind us shouted whenever the Irish one even remotely looked in our direction.
  • The scream that could possibly have perforated my left eardrum when Harry the one with the lovely hair walked close by and actually waved and blew kisses.
  • The little game we played to point out the best outfits. The two older ladies that had the skin tight 1D t-shirts and flashing headbands easily won, with the dad in the home decorated t-shirt a close second and the toddler in the white high heels came in third!
I have been fortunate to attend quite a few live music events and always have a good time but there is often a level of reserved enjoyment. Of course there are those who can really let it go but most hover on the side of enthusiastic toe tapping. Not long after moving to Australia one of my absolute favourite singers was touring with a farewell show. I treated myself to a good seat as this was it - the last opportunity to ever see him again....
The place was packed, the stage was ready, the music started, I got to my feet.....and I appeared to be the only one!
As the night went on, a few more managed to get up and join in with some rather unenthusiastic bopping, but I was less than impressed. (Sorry Mick)
There have been other bands that I have seen that have been more successful at getting the Brisbane crowds going, but I seriously doubt that any can get quite the same reaction as One Direction.

One Direction Suncop Stadium Brisbane Feb 2015
Whatever you may think of the commercialism that is the One Direction machine, their much anticipated live performances are pretty enjoyable.  Partly because of the energy that they have on stage but in the main because the audience is just happy to have a really good time.
If I'm to be a little over critical then they did appear to be slightly under rehearsed and surprisingly as this is the start of the tour they even looked a bit tired. The fun banter element between them that was in abundance in previous tours was not quite there but I suppose Suncorp Stadium is a little vast to really capture that. They did however still manage to flutter the hearts of those close to the stage with the constant waves and occasional short exchange of words.

The great thing was that they encouraged that wonderful spontaneity and lack of inhibition that we somehow lose a bit of as we age.  If the crowd felt like dancing, jumping, screaming, laughing or singing, then they just did it. No self conscious toe tapping bopping here!  Everyone lived the moment and it was hard not to get caught up in that. Ok, there was the one mum who sat down in the row in front - yes, sat in the row in front (maybe she wanted to be at the Einaudi concert?  Or maybe she was the same mum that sat with arms crossed behind me at the last 1D concert ??) but most people were on their feet. There were a few microphone and musical glitches but no-one seemed to notice and if they did, they just didn't care.

So I watched the crowd and it really made me smile. I watched Sibs and I was so happy to be next to her. So happy to be in that moment of experiencing her literally jumping for joy and just being twelve.

One Direction Suncorp Stadium Brisbane Feb 2015 

I later found out that the Einaudi concert was as I expected -  exceptionally good. There is no questioning the talent of the Italian pianist.  However, with his back almost to the people, Mr Einaudi apparently shared one mumbling "thank you Brisbane" with his audience.

Each member of One Direction thanked Brisbane and Australia over and over again. There were fireworks and streamers and laser lighting. They told their audience that they were beautiful and amazing and everyone felt the love. Us oldies even got a thank you for bringing whoever we brought to the concert. Tick!

I'm glad I made the choice that I made that night. I got to enjoy the performance for different reasons to the majority. Yes, I did appreciate the catchy songs but more than that I absolutely loved the atmosphere. I felt quite young and alive.....and happy.

A few days after the concert I was at home doing some housework and as usual I put the ipod on shuffle to help me along. Without a word of a lie out of almost 900 tracks the first track was "That's what makes you beautiful" by One Direction, but rather more disturbing was the fact that Ludovico Einaudi kept on popping up at a rather alarming regularity! It was almost as if he knew I had stood him up!
Ludovico, you'll just have to come back to Brisbane -  just make sure it's not the same day as a rather popular boy band!

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