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!

Monday, 13 October 2014

Another step

Off to camp

You know that film and theatre show Mamma Mia?

You know that touching scene when the mother and daughter sing "Slipping through my fingers"?

"School bag in hand, she leaves home in the early morning
Waving goodbye with an absent-minded smile.
I watch her go with a surge of that well-known sadness
And I have to sit down for a while"

That Abba song came on my ipod this morning and it always gets to me - always. (Yes, I have Abba on my ipod!)

It seems like moments ago I was dropping Sibs off at her first day in her new primary school in Australia and then yesterday I was taking her to the airport for her final year camp trip to Sydney and Canberra! School camps are big over here.

In the final year of my primary school we went on a camp trip almost down the road to Parkmill in the Gower Peninsula. I have many memories. I think a few of us girls had read the Enid Blyton books Mallory Towers and St Clare's and had this idea that it was all going to be midnight feasts and a jolly good time! Instead it was cold and wet and we seemed to walk for miles and miles looking for lichen and trying to keep our soggy clipboards dry!

Sibs's trip on the other hand, is a full packed itinerary that takes in all the important sights of Canberra - Parliament House, Australian War Memorial, Government House, Questacon, Royal Mint, National Gallery and not forgetting an afternoon at Taronga Zoo in Sydney.  A bit different to traipsing through the Gower coastline in South Wales!

The house is already feeling so quiet. No constant singing, no bouncing, twirling and prancing around.

Twmff is doing his usual moping around the place when Sibs isn't here. He's such a sook sleeping on her school bag.

I can still see you Mods - almost camouflaged

Modlen on the other hand.... not a care in the world! Yesterday afternoon I was intending on planting some herbs in there, but it was a shame to disturb such a heavy sleep so I decided to pick up some crochet instead.

An hour quickly became two (and then more) and it was so relaxing on the front deck that it just called out for a Hendricks, a candle and some crooning from Mr George Michael on the ipod. Bliss.

from my instagram feed

Routine is out of the window this week - I'm not organising my day around early morning music drop off or 3pm school pick ups. It's strange.

"Sleep in our eyes, her and me at the breakfast table
Barely awake, I let precious time go by.
Then when she's gone, there's that odd melancholy feeling
And a sense of guilt I can't deny"

I'm getting a glimpse into the next few years of increased independence. Whilst I encourage it and seem to constantly have the conversation with Sibs about needing to "take responsibility for this, that and the other" it's also a shift into a new world.

"Slipping through my fingers all the time
I try to capture every minute
The feeling in it.
Slipping through my fingers all the time.
Do I really see what's in her mind.
Each time I think I'm close to knowing
She keeps on growing"

For Sibs, this week away is not only to go and see and understand more about Australia, it's really another step in growing up.

I know each phase in childhood is big at the  time - first steps, first words, first school....
Somehow though, this one feels huge. I can really see her shaping into a young adult. She's getting more and more confident in expressing herself and sharing her opinions.
I've stopped saying "please stop growing up" and I'm making a conscious effort to enjoy the change in her...however challenging some of the sharing of opinions can be!

As she was chatting with her friend at the airport yesterday she said that she had two things to remember on this trip - to have fun and to concentrate.

So she does listen to what I say...

enjoying a quiet Monday moment

Happy Monday.
Here's to a good and safe week, full of concentration and fun!

Wednesday, 8 October 2014

Scoliosis - MRI scans

A few weeks ago I wrote about Sibs's diagnosis of idiopathic adolescent scoliosis and the first steps in the treatment.  (HERE)

Since then there have been a few other appointments and so here is the next instalment.

During the initial consultation with the orthopaedic spinal surgeon Dr A requested that as part of her care plan he wanted an MRI scan of Sibs's back. Even though he was confident that her scoliosis is idiopathic (no cause) he wanted to be doubly sure and to rule out any other possible complications.

As we were discussing the arrangements for the MRI we also had a conversation about research into scoliosis and any previous studies on the condition. Dr A mentioned a study that is currently collecting data to understand the differences between a healthy and an abnormal spine in growing girls. We established that Sibs would be suitable to participate and were then put in touch with the research team. 

One of the researchers emailed me details of the study and various consent forms. It was then arranged to conduct the MRI for Dr A and the MRI for the research team at the same time and venue. Isn't it great when people actually co-operate and make your life a little easier?

So on a Saturday morning before ballet practise we found ourselves at a hospital diagnostic department.

Sibs was measured and photographed by one of the researchers and then shown around the MRI machinery and the whole process was explained to her.
I can't praise the medical team enough. The way that everything was so calmly introduced and explained was pretty amazing. She was encouraged to ask questions and the first one she came up with was "Can I still talk when I'm in the machine?" Yes, typical Sibs!

They took the time to chat through the various buttons and gadgets including the fact that it would only take 6 seconds to get to her if she pressed the panic button at any time.

By the time the heated blankets came out and she was invited to select a movie to watch I could see that she was more than comfortable. 

Sibs spent about an hour and a half in total in the MRI room with each scan taking about 10 - 15 minutes. Each time something new happened it would again be explained to her and so the unusual clunking noise would not be a surprise.

I think she was a little disappointed when the scanning finished as she never got to see the end of The Lorax!

The results of the MRI scans will now be collated and sent to the consultant and to the research team. As part of the research study she will be required to undertake scans at 6 monthly intervals or annually depending on her growth pattern. 

As a bit of a plug - the research team is also looking for healthy spines to study. Here is a copy of the request.

So Brisbane based people - they would be very grateful for anybody willing to give up a tiny bit of their time...just one hour a year over three years.

I will write another time about the fitting of the back brace and how Sibs is managing and adjusting to wearing it.

My super star!

Monday, 6 October 2014

School holiday crochet, concerts and the beach.

We are at the end of a two week school holiday here and it's just starting to feel quite Summery. The days are perfectly warm and the evenings still necessitate a cardigan....and I do love my cardigans.

These holidays we spent some time at home and some away at the beach. It's been Relaxation with a capital R. 

In anticipation of the holiday time and some crochet hours, I was lured to fill a basket with some gorgeous Merino wool in a rainbow of colours - on sale of course! I can't describe how luxurious the wool feels. I've predominantly used acrylic in my crochet to date - it's cheap and I have to admit to not having too much faith in my ability to splash out on anything more. 

I wanted to try and test myself with a project so found a pattern for a stripe blanket with a variety of stitches. Hmm, case of running before I could walk I think.  

After a while it became apparent that my stitches were increasing and then decreasing at an alarming rate. There was nothing else but to undo and start again. Oh the agony!

version 1

So armed with some prior knowledge and tips about tension I have been methodically counting to 169 at the end of every line - sometimes twice just to be sure. I think I've got it now.

version 2

In other crochet news I decided that I needed to know how to do a ripple stitch so I began to crochet away during ballet lessons and it morphed into a cushion cover!

There have been a number of pretty exciting concerts this month. The first was to see Queen with Adam Lambert. I think if anyone is going to get close to filling Freddie Mercury's shoes then Adam Lambert would have to be the man. 

It took the crowd a little while to warm to him, but he soon got everyone on side not only with his talent but his genuine appreciation of his fortune at being on stage with such great musicians. 

Then there was Andrea Bocelli. An evening of glitz and glamour and a secret competition that no-one told me about - who could wear the highest heels! - I lost.

He was joined by the lovely Delta Goodrem who charmed the audience with her solo and duet performances. The only disappointment of the evening for me is that Mr Bocelli never uttered a word. I think there was a murmur of a 'thank you' at one point, but I wanted to know the man a little more. (Blurry photos sneaked on my phone)

To round off, the charming and cheeky Robbie Williams bounced into Brisbane and boy did he entertain. 

I was so close I could read his tattoos!

These photos were taken with my phone and I was a bit caught up in the atmosphere to concentrate too much on the perfect shot. Just trust me that it was spectacular.

So after all that excitement it was time to stop and re-charge. That happened at the Sunshine Coast. 

Our first evening there, Sibs and I decided to head to the beach. We walked for miles chatting and singing away. There is something special about an empty beach, the sound of the sea and the squeak of the sand. 

During the week away we spent some time in Noosa catching up with family and we visited Eumundi early in the morning to go to the markets. Yes, I got up and I was there as it opened!

One of the days we bumped into some school friends who were staying close by and I happily watched from the comfort of my shady spot on the grass with a coffee and a great book. I enjoy the beach when it's quiet and when the sun is down. After years in Australia it's still not my favourite place to be when it's crowded.

All too soon it was home for the long weekend and the countdown to the preparation for back to school and work. We had eleven for dinner on Saturday night and it was the first time we have eaten outdoors since the Winter. Another sign that it's warming up.

There was one little lonely chocolate pot strategically hidden placed at the back of the fridge after the dinner party...

Shame for it to go to waste!

So that was a bit of a September round up and some of what we have been up to during the school holidays. 

It's now time to get a G&T and sit outside on this public holiday Monday to enjoy the scent of the last of the Jasmine flowers.

(Following on from my last post, Sibs has now got her back brace and is being a little star managing it. Thank you all who have sent lovely supportive messages. I will update soon. )

Monday, 15 September 2014

Scoliosis - Diagnosis and Brace cast

I've thought long and hard about this blog post.

It's been written for a while and I just haven't got around to completing it. It's not because it's something that I wasn't sure about sharing, it's just that I wanted my girl to be completely comfortable with what is shared.  

A few months ago we started on a bit of a medical journey with Sibs. 

She and I have chatted about keeping some sort of a diary or some documentation about it all. We considered setting up another blog just for us and family and friends, but then it makes a bigger issue about what is essentially just another part of our story. So in the end we decided that we would keep a bit of a record here. So here it is - part 1, it's a bit wordy....

Towards the end of the Summer we noticed that Sibs had a slight difference in the contour of her back when she bent over to pick something up. She was wearing a swimsuit when I noticed it so her back was exposed and there was a definite unevenness between the left and right side. 

She told us there was no pain or discomfort, she was able to move and stretch so we parked it for a while with a promise to keep an eye on it.

A couple of months she mentioned that she had a pain in her neck so I immediately made an appointment with our GP to get it checked.

The GP asked a few questions and got Sibs to stand straight, put her palms together and slowly lean forward pointing her hands to the floor. 

A few measurements later and the GP advised that we needed some x rays to confirm a diagnosis of kypho scoliosis. (Basically, scoliosis is an abnormal curvature of the spine. In Sibs's case it presents as an inverted S. Wikipedia can give a detailed description of what scoliosis is - HERE)

A couple of hours later the x rays were done, Sibs was back at school and I was on my way to work. 

Neil was away so I left a message for him - not to alarm him, I just thought that he needed to know how I had spent my Friday morning! When he got an opportunity to call back he told me that as he received my message he had just finished talking to a researcher who was working on a study of spinal deformity in children. How's that for a coincidence? Through this contact he immediately got some reassurances and secondly a recommendation of a local scoliosis consultant/spinal surgeon.

So it was back to the GP who then arranged a referral. Things can move pretty fast here, and within a week  I received a phone call with details of an appointment for more x rays and a consultation. 

The consultation was an examination, a confirmation of diagnosis of idiopathic adolescent scoliosis and a talk through some options. 

Dr A told us that the normal range of curvature of the spine is up to 10% and Sibs has a curve of 37% which he deemed to be moderate to severe. 

He didn't believe that surgery was necessary at this point so recommended a back brace. The idea being that as Sibs continues to grow the brace will prevent the curve progressing. It would not cure the problem, just hopefully stop the degree of curvature. 

At this point I have to say that my girl has just taken all of this in her stride. She has a natural positivity and I have been incredibly proud and inspired by her attitude. 

So next on the list of things to do was to organise to be fitted with a cast for a TLSO brace. ( a thoracolumbosacral orthosis brace) 

The orthopaedic clinic was highly efficient and called me to arrange a convenient time and so Sibs and I headed there one lunchtime. 

We were introduced to Gary who after some chit chat about Sibs's name gave her a number to remember. She was going to be number 6230 - that's how many braces Gary has made in his 45 year career. Impressive....

Next we were taken to a small room and I don't think it had actually changed in 45 years! 

Gary was more than happy for me to take photos, and he kept directing me to where he thought I would get the best shots.  (I had obviously checked with Sibs beforehand that she was ok with this.)

He explained the process - Sibs was to lie balancing on an elastic strap and he was going to wrap her torso in plaster, wait for it to set and cut it off to produce the cast. 

I had expected a rather more state of the art digital something or other, but he obviously knows what he's doing.

When he invited any questions, Sibs asked him what would happen if she fell off the table. I could see that she was weighing up the odds!

In reply, Gary told her that she would be the first to ever do so. I'm not so sure.....

Anyhow, she managed to get herself in position and apart from a small fit of the giggles survived the casting. 

She wore a bandage type body stocking and a thin piece of plastic similar to a ruler was placed under this. The plaster cast was then wrapped around her body. The giggles came as she got a little confused between her torso and her tummy and her pelvis and when Gary was asking her to move she was moving the wrong parts!

She lay there for a short while and then the cast was scored with a knife along the piece of plastic and then cut. After a quick clean up she was done.

So what do you do after such an appointment? Well you head out for a hot chocolate and a little treat whilst Gary sets to work on brace number 6230!

Next on the agenda - an MRI scan.

Wednesday, 10 September 2014


Last Thursday was a day of days!

In fact, the whole of last week was just 'one of those weeks'  with a few challenges on the work front and the juggling of roles.

It really got me thinking about this work - life balance thing.

A bit of a curve ball and all of a sudden it's chaos.

Let me share a little of my day...

Neil and I car shared last Thursday. He was spending most of the day at the Convention Centre near the city and I was back and fore between locations. I was in charge of picking up Sibs from after school care and he planned to get a cab home later on in the evening. We parked up and went our separate ways.

A few hours later I realised that he had the set of keys, or rather I realised that I had forgotten my keys... I tried to contact him and left a message to say I was heading into the city and would try and arrange a meeting point to pick them up.

Work was busy and I sort of forgot about it and set off on the bus to my next appointment.

I was just about to walk into a lecture theatre when my phone buzzed. Not wanting the distraction I decided to ignore it. Off it went again and this time I glanced down to see the words "SCHOOL" flashing back at me.

Cutting a long story short I had the conversation that went along the lines of  'you need to come and pick up your daughter she is injured'.

Oh heck!

I'm in the city....my car is miles away.....(I don't have any keys anyway!!)...I'm now running late for a presentation.....I can't get hold of Neil....I can't get hold of my friend and neighbour....I'm actually walking around in a circle!!

A few minutes later my friend calls me back realising that if I'm ringing in the middle of the day on a work day that something is up. She says all of the right things - reassuring me that she can be at the school in 5 minutes and will call back if she needs to. Sooo grateful.

So off comes the mother hat and back on goes the work hat.

Of course my phone buzzes again about half an hour later!

This time it was Neil responding to my rather curt "answer your phone" text. (There were more words than that in my text, but I won't share them here!)

Once my presentation was over I gathered my things and grabbed a cab to take me to Sibs.

We took a gentle walk around the corner to get home and then of course  I remember that I had no keys to get into the house!

I didn't have to worry as the front door was wide open!

Yes, the perfect ending to a ****** day.

Do I go in or stay outside? Do I call someone? My thoughts were moving at speed and I couldn't really think straight. I ventured in as far as the hallway and had a quick look around - the computer, TV, ipad all seemed to be in place. It would appear that the front door had blown open as the Yale lock hadn't been secured that morning. Phew!

Panic over, I set about making sure that Sibs was OK. Warm bath, drink, hot water bottle, can she have ibuprofen? What's for dinner?

She got to bed and Twmff the cat (bless him) stayed by her side and gave her lots of purring cuddles.

I eventually sat down and that's all I wanted to do was get lost watching something mindless on TV.

No, that wasn't going to happen  - the TV decided that was the day it didn't want to co-operate.
I changed the batteries in the remote control - nothing,
I fiddled about with cables - nothing.
I googled the problem - nothing.

I gave up and went to bed.

A few days later I met up with a couple of mothers from the school who asked me where I was on Thursday night. It was only then that I remembered that I should have been at a meeting that night! One where I had a reasonable input. I didn't send any apologies or report - I just completely, absolutely forgot everything about it!

There were just too many hats to wear that day. Too many balls to juggle.

The tipping point of the scales is so minute when it comes to balancing roles.

 Life is not full of 'perfect moments'. Life is at times challenging and it does go wrong.

I've done the full time worker, I've done the full time mother and I'm currently doing the part time trying to balance everything scenario.

Nothing is perfect. Nothing works all of the time, and everything is temporary.

But I have to remember that one bad day is just that - one.bad.day.

So it's almost Thursday again. Sibs is fine, there are checks in place to ensure that I always have my keys, and planned drop offs and pick ups have been worked out for the week.

Just to keep it real - the TV still isn't working - but that's OK. I can manage that one.

Monday, 25 August 2014

Weekend Birthday

Another year..... I won't go on about time going so fast etc, etc (but it really DOES!)

The annual breakfast in bed birthday treat happened here this weekend. She waits for me to stir and get myself out of bed and downstairs to prepare the tray with a small breakfast and a few cards and gifts. She always pretends to be asleep but the smirky smile tells me that she's been so patiently waiting....

Quick rendition of "Penblwydd Hapus" and down to the kitchen to begin a day of celebrating.

The lights are on because it's dark, which means it's early - really early! Way, way too early on a weekend morning...! We had to fit in this birthday breakfast before setting off for a school activity, but we managed - just.

No birthday can pass without cake and this year the request was marble cake. The last time I made marble cake was exactly one year ago.

The other treat for birthdays in this house is that you get to choose where or what we eat. This year it somehow lasted the whole weekend. Sibs opted to stay at home rather than choose a restaurant  and on the birthday eve it was calamari (ewww!), then the request was Cesar salad for lunch and home made ravioli for dinner. Oh, and the request for ravioli fillings? - Spinach and ricotta in some and meat in others! So in between ferrying back and fore from different weekend activities some serious work happened in the kitchen department.

Home made pasta is sooo good, but it's such a fiddle and even though there were no complaints on the taste front I have to say the presentation of the little ravioli parcels was rather questionable! The tomato sauce did its job in hiding the rather strange looking shapes!

A quick clear up and nana, Sibs and I were off out to meet up with Aunty D, Aunty L and a friend for a girls night to the city to the Tina Arena Reset Tour concert.

Sibs was amazed at the lack of screaming.  I suppose when you've experienced One Direction and 5 Seconds of Summer anything else will appear subdued!

Of course there had to be the obligatory selfies.

The night was great and it was an extra special treat for Sibs to get together with Tina and the team after the concert. It did mean that it was a very late night, but a lovely ending to a packed birthday weekend.

Happy birthday to my wonderful, wonderful girl.

Related Posts Plugin for WordPress, Blogger...