Happy Days – he’s 18 now and looking great!

Chris with me at SwingersChris has recently turned 18 and I thought it was a good time to give an update on how he has progressed since his surgery in December 2014.  He is now 6 foot tall with broad, straight shoulders. He has no pain from his back but occasionally his neck feels stiff where the vertebrae were fused to the rods at the top of his spine.

He is a completely normal (!) teenager and enjoys life to the full.  He has worked a weekend job at a garden centre for the last two years and this has been great for developing his shoulders and arms due to all the lifting and carrying required.  He has also learnt a valuable skill – how to be charming even when someone is being rude to you!

He has just completed his A levels and is now on a gap year while he decides what it is that he wants to do.

For us Scoliosis is now forgotten and rarely spoken of.  Chris had a final follow-up with Dr Conlan in February 2017 and we were told his file was now ‘closed’ with no need for further consultations unless he experiences any problems in the future. That was an amazing day for all of us but most of all for Chris who has taken it all in his stride and remained positive and lovely throughout.

I hope this positive update helps those of you who are coping with Scoliosis now and may worry about the future.

 

 

Phew – he’s made it back home again!

p1040550p1040996My intrepid explorer has returned home again and he’s had an incredible experience.  Staying with a Chinese family was tough as his family didn’t speak much English and he was relying on Google Translate to communicate with them!  But he loved the trip, experienced a totally different culture and had absolutely no problems with his back.

In fact, his back is no longer a topic of conversation in our house – he’s just Chris again.  A typical teen with a messy bedroom and a need to do more homework as GCSE’s are now just around the corner…Happy Days!

And he’s off again…this time to China!

p1040983After the success of his trip to Kyrgyzstan, Chris wanted to take part in another school trip – this time to China!  It was a ‘foreign exchange’ visit – like you do for French or Spanish GCSE, but Chris is studying Mandarin so he has to travel…to China.  The school is taking 24 students and they will spend 3 nights staying with a Chinese family (let’s hope they speak good English) go to Chinese school and at the end of the trip visit Shanghai.

I don’t remember my school days being quite this exciting!

Just 7 Months Post-Op and he’s off to Kyrgyzstan!

This wonderful photo was taken just before Chris loaded his rucksack onto the coach to set off for Heathrow and his amazing expedition to Kyrgyzstan!

Chris leaving for Kyrg - Copy

I think I was the happiest mum there – so proud of him for being fit and strong enough to take part.  Whilst other mums were crying at saying goodbye to their children I was crying tears of joy because he was able to go!

Once again I have to pay tribute to Mr Conlan and his amazing team in Cambridge who straightened and fixed Chris’ spine – they are a remarkable team.

All that’s left for me to say now is that I wish anyone who reads this blog the very best of luck with their Scoliosis journey.  When I started to write this I had no idea of how many twists and turns and ups and downs our journey would take us on, but we are now coming to the end of our roller coaster ride and I for one am looking forward to getting off this ride and leaving the park!

I will continue to post updates about Chris occasionally but I hope our life continues on an easier path for the coming years!

Getting Ready for Kyrgyzstan

Now that we have the all-clear from Mr Conlan we can complete the final preparations for Chris’ school expedition to Kyrgyzstan in July.  Chris is now walking with his trek rucksack and carrying an ever increasing load to slowly strengthen his back and get it used to carrying a reasonable weight – although with the weight he carries around in his school rucksack every day I think he will be fine.  He needs to get fitter though and the dog is enjoying all the extra walking that is now going on in our house.

He is so excited and happy to be going and the company leading the expedition (Bull Precision Expeditions) have been wonderfully supportive throughout his surgery and recovery and I know they will look after him.

Kyrgyzstan

6 Month Check Up

Today we returned to Cambridge to see Chris’ surgeon Mr Conlan again – this time for his 6 month post-op check up.  Chris was taken for x-rays again and then we went in to see Mr Conlan and Sally.

It was a wonderful appointment in which Mr Conlan said Chris had made an excellent recovery, the implants in his back had fused well and…he could go on his expedition to Kyrgyzstan next month!!  This was the news we had all been hoping for and, as he leaves on his travels on 11th July, we need to get busy with the final preparations.

We are not due back at the hospital now for another 9 months which takes us up to March 2016 – fantastic news.  I think our long Scoliosis journey is now almost done.  Chris has to stay off PE at school for another 6 months, but other than that he can lead a pretty normal life – walking, running, cycling, swimming etc.  And we can go on our skiing trip that we had to cancel last Christmas – we can’t wait!

A long overdue update! 3 months post op

time-fliesThey say time flies when you’re having fun and for our family this has been so true!  The stress of Scoliosis is no longer a big feature in our lives and there are days now when I don’t even think about it – which is just fantastic.

Chris continues to make a text book recovery from the surgery and the redness of his scar is fading well.  He is not good at doing his exercises (but then he never really was and we always had to nag him!) but Steve and I have not pushed him in the last few months.  We felt he had had 18 months of nagging and exercises and the work he needs to do now can be done when he wants to do it.  His right shoulder is slightly forward and dropped and he needs to strengthen the muscles in his back on that side to pull the shoulder back and up.

He is on schedule to go on his school expedition to Kyrgyzstan in July and we will go back to see Mr Conlan for a final check up before he heads off on his big adventure.  I am so delighted that he can go and from June (which is 6 months post op) he can start to do some proper hiking training and build up his fitness.

I am not sure how much longer this blog will run as I don’t have that much more to share but I will do another update after we go back to see Mr Conlan again.  And if you have read this far then thank you and I hope it has been helpful to you!

 

Follow-up appointment with Surgeon

Today we returned to Cambridge for a follow-up appointment with Mr Conlan.  Before we saw him Chris had another set of x-rays taken and then we waited for our turn with Mr Conlan.  He checked the x-rays and said that everything was where it should be and looking good.  He also examined Chris again and was very pleased with how he was now standing – tall and straight.  He even used a plumb-line on Chris’ back to see how straight it was!

We also saw Sally again – the really lovely nurse who looked after Chris immediately post surgery and she took him off to see how tall he was…he is now 2 inches taller than he was in December before the surgery…just amazing!

We also asked Mr Conlan’s advice about whether Chris could go on a training weekend for his expedition which is taking place in the Lake District in March.  He had no problem with Chris going from a medical point of view, but did suggest that Chris try sleeping out in the garden to see whether it was too uncomfortable for his back, or whether he felt ok.  He also said that it was too soon for Chris to be carrying a full kit ruck sack and that he should only carry a ‘day’ sack.   We will have to discuss this with the school and see what they can do to help Chris.

After seeing Mr Conlan we had an appointment with the lead physiotherapist, Sarah Charlton.  She showed Chris a number of exercises that he needs to do to improve the position of his right shoulder.  It is rolling forward at the moment so he needs to strengthen the shoulder muscles in his back to pull it back into place.  The exercises were very simple compared to the Schroth exercises that we had been doing so hopefully Chris will be happy to do these every day.

We also discussed when Chris could start to do more exercise and the advice was to avoid PE for the rest of this school year and not to do any form of exercise that requires him to twist or turn and not to take part in any team sports where people might knock into him.

So, another tick in the box!  We will have one more check-up in July before Chris goes on his expedition to Kyrgyzstan and I think the rest is now up to us.  Steve and I will continue to encourage him to do his new exercises and I will also get him out walking with me – might have a battle on my hands over that one though!

 

Back to School – 6 weeks post op!

school signToday Chris went back to school for the first time since his surgery.  He was really excited to be back in his uniform (he needed a new school blazer he’s grown so much!) and keen to see all his friends and catch up on all the gossip.

We agreed that he would start with a half day and I would pick him up after the lunch break so that he could ‘hang out’ with his friends.

He hadn’t told any of his friends that he was coming into school and when he walked into his tutor room he got an amazing welcome and lots of shouts and cheers – I think he was really pleased!  I picked him up as planned and of course asked him how he was feeling…he replied with his usual response – “fine”.  He didn’t find it difficult to be in school and carried his ruck-sack on his back as usual.

So, next week we are going to try a mixture of full days and half days and see how he gets on.  Judging by how he feels today I think it will probably be mostly full days – which I find incredible after just 6 weeks of recovery.

I’ll let you know how next week goes, but it’s all looking really good here…

Time to Reflect a Little

As we move into week 5 post op I have had some time to reflect a little on our Scoliosis journey and I wanted to share what I feel we have learned.

When Chris was first diagnosed in August 2013 I was horrified by the thought of surgery and scared myself silly looking on the internet to find out about corrective surgery. I vowed that we would do everything in our power to prevent Chris having to go through that and I really believed that Schroth therapy (the specialised form of physiotherapy for Scoliosis) could prevent curve progression.

In fact, I think I pretty much wore blinkers for the first year – pushing Chris to do his exercises twice a day, encouraging him by saying that doing the exercises would hopefully keep his curve under control.  Fortunately neither Steve nor I ever told Chris that the exercises would definitely definitely stop curve progression – we always focused on the fact that they would help balance and strengthen his muscles while he was growing – which hopefully would hold his curve where it was.

Ultimately, his curve did progress and it progressed fast – something that came as a hell of a shock to us all.  But at no point did I feel we had failed.  We had done our very best to support Chris and as time went on it became clear to us that the best thing that we could do for him was to agree to the corrective spinal surgery.

I really struggled to come to terms with it though as it brought back memories of my own upsetting experience of surgery as a five year old child – and hospitals were very different in the way they looked after children then.  I knew Chris would be well looked after and he was also old enough to understand everything himself – indeed the decision to go ahead with the surgery was made by Chris with our support.

And sitting here now, with Chris tall and straight and growing in strength every day, I find myself thinking ‘thank God for the corrective surgery’ that I was so desperate to avoid. We are very lucky that we have these incredible surgeons doing what they do to help children like Chris.  Without surgery his spine would have continued to curve with each successive growth spurt leaving him with a very twisted back and potential longer-term health problems.  I know that no parent wants their child to go through major surgery, but if it is their best option then it should be embraced as the life changing, and I believe for Chris, life enhancing, option that it is.

Finally I want to share what we have learned about exercise and physiotherapy for Scoliosis – it may not prevent curve progression, but it will help your child’s spine to be flexible and their back muscles to be strong.  This makes the surgeons work a little easier because it is simpler to move and re-position a flexible spine than one that is stiff.  And having strong back muscles that are used to being stretched makes recovery much easier for the child.  The surgery moves, stretches and fixes their muscles into new positions and this is what causes a lot of the post operative pain.  If the muscles are flexible they accept their new positions more easily and there is less pain and discomfort for your child.

Chris has recovered at remarkable speed and I think Steve and I can take some small amount of credit for that, thanks to the exercises and stretches we made Chris do in the months leading up to surgery!