2 Year Anniversary - 6.1.13

Ben's 2nd Anniversary Newsletter 2013

HAPPY NEW YEAR EVERYONE xxx

St Louis the return trip!!!!!!

Well after a long 22 hours of travelling we finally navigated ourselves to the hotel in St Louis. It was great to be back in a familiar place.  After only being the hotel for 2 minutes we met a couple of SDR pals. 

After getting some supplies form the local Snuckes thanks to Tim for taking us. We settled down for an early night.  

Before we knew it it was Monday morning and our first chance to see the amazing children's hospital and see what Dr Park has to say about Ben's progress. Apart from arriving an hour early! Yes it was my fault!!! We bobbed to the Bread Company for a quick coffee.  

In Dr Parks office we met up with Abby the amazing media lady & Erica (from America) the fabulous PT -  it felt like being back at home.

We were called into see Dr Park office, it was like we were back 19 months previous sat there all nervously waiting to see the great man himself.  

As always in walks Dr Park full of smiles and Pleased to see us. 

We had a long chat & he also took time to examine Ben asking lots of question & answering all of ours.  He explained the areas we needed to work on & stood by his early prediction that Ben will walk the majority of the time unaided and will probably only need a stick for long distances!!! We were amazing as we thought this was where Ben would & maybe we would see a small amount of improvement but this again exceeded our expectations.  I think Ben was rather pleased too.

Dr Park Left the room, he did bob back in t say he would like to see us again in a years time - So another trip to plan!

Once we had finished we had 30 minutes until our video PT assessment with Erica, s Damian took, Grandma, Grandad & Jakey off to the zoo where we would meet them later.

Erica called us in – we had a great chat and caught up on all the gossip. We did have to do so much as it was only the things Ben could not do last time we were there.  There was lots of laughter as always when Ben & Erica get together.  Before we knew it we were all done and heading off to the zoo. 

Charlotte X

End of an era

Well that’s it; Primary school is finished for Ben.  Who would have thought all those years ago when I first dropped Ben off for his first day with his walker & splints on that he would be independently walking out by himself and been on ONE AMAZING JOURNEY. 

Ben has changed so much since, and in many many ways – the last 3 years have been the hardest by far. But as always Ben take it all in his stride!

We wish to thank every teacher & teaching assistant that has helped him along his school life.

Mrs McClean, Mrs Mitchell, Mrs Martin, Mrs Pratt (Caz) Mr Smith

Mrs Rodley & Mrs Bullock – Mrs Clarke, Mrs Ambler, Mrs Cawood

Miss Celli – Miss Allen, Mrs Bates, Mrs Lowe, Miss Laycock

Miss Hetherton – Mrs Poad, Mrs Tate, Miss Dennison (aka Otchel)

Miss Taylor – Mrs Jenner, Mrs Fischbach

Mrs Buckley – Mrs Fox

Mr Marsh & Mrs Robinson ----- To name but a few ---- THANK YOU xx

Autumn 2008

Summer 2012

And so the summer is finally here, well the weather seems to have forgotten.  Ben is loving his new found independence which has enable him to go into town with his friends & also thanks to his swimming achievement s I now feel confident to let him go to the Lido – Which he loves!

So we find ourselves in a very familiar place – looking at packed bags nervously check & re checking ticket & passports.  But this time it’s different, we are heading back to a very special place – St Louis.  This time the anxiety has gone it’s going to be more of an exciting time and we can’t wait to see everyone again.  We are also introducing Grandma Linda & Grandad Rob to our very special place St Louis & they will get to meet the great man himself – Dr Park.

We had always planned to go back & see Dr Park and his team it was just about the timing, so we made the decision in the early part of this year to make the journey back to St Louis for a number of reasons.  We have had no end of problems trying to get suitable foot orthics for Ben and fail until very recently thanks to the great team at TayCare in Leeds.  But we want the experts to give us there opinions so we can move forward as we now know Ben will always need some sort of foot support whether it is a splint – SMO (small ankle splint) or insert.   So we hope they will help us make the right decision for Ben’s future. 

Secondly we always planned to go back to see St Louis in the summer as it was such a beautiful place and will always have a special place in our heart.  We decided to combine it all with our summer holiday. 

I will try to blog a few times while we are there to fill you all in on our adventures – one thing is for sure it going to AMAZING...

A very special place!

More from across the pond later!!

Charlotte XX

Ben 10 +1

Well 11 years ago today one little shrimp came into the world just a little early.

One Day Old!

Since then he has grown into one amazing young man who I adore and am so very very proud of in many ways.

Ben has had a hard year both mentally (SAT’s!) and physically but has always carried on with his relentless smile & only a small about out grumblings.

There have been lots of achievements this year – 2 Karate Grading’s , Swimming 400m!, Going swimming ON HIS OWN with his mate to make but a few.

In 2 days time Ben will leave Primary school to head off the great unknown world of Grammar school, he is excited & nervous as we both are but this is a challenge we are both ready for (ish!).

He has an amazing group of friends who have been there through thick & thin and I’m sure there will be there for him at Grammar School.  I can’t believe how much he has changed in the last 6 months alone, to say we are proud is a huge understatement, and his finally school report reflects just how far he has come both academically & physically.

So to the Summer – a well earned trip to St Louis to see Dr Park & all at St Louis Children Hospital.  We are so looking forward to them seeing him & also so we can pick their brains about the concerns we have with Ben.  One thing is for sure this has a whole different feel to the last time we went.  The finally bonus is we are heading off to Orlando for a spot of Disney Adventures & cheeky dolphin swimming.

What more can we say but Thank You to all for you for helping Ben get to were he is now & who know where he will go next!  The Skies the limit!

Charlotte xx

Many New Adventures!!!

Many New Adventures!!!

It has been a while since my last update and a LOT has happened since then.  Ben hit his 1 year post op anniversary full on and threw himself into all sorts of things.

Ben & Jacob began karate back in September, both really enjoying it and full taking part.  We took both (nervous) boys up for their grading on Sunday 26^th February – Ben was a little more so then Jacob. 

The grading began – The boys worked so hard, Ben managed to stand (not fall) for 50 minutes, he did get a 2 minute break when he asked me to rub his feet.  Then it was all over, we waited for Mark to read the results. Jacob came first –

10/10 & 6 Gold stars – meaning he had excelled in 6 areas.

As for Mr Ben well....

10/10 & 3 Gold stars – I of course burst into tears, to say we were proud was an understatement.  Ben was so pleased, as was everyone in the group.

In May they both for their Orange Belt Grading and again both passed.

This would not have been any way near possible before SDR!

The next major event this term was our first visit to IGS (Ilkley Grammar School) Ben is due to start in September 2012!!!! 

Along with the Learning Support Team & school it had been decided to try Ben out with a couple of half/full days as to see exactly how & if he manages to get himself around.  He was really keen to do this but as the day finally arrived he changed his mind.  After a long chat he agreed to go and see how he got on.  So we pulled up to the school & we met Mrs Brayers and he was off.  I had charged & top up his phone & asked him to text me at break time just to see how he was going.  I checked my phone at break & no message! I did panic a little but there was nothing I could do.  I checked again at the end of break and there was a message ‘Having fun ;)’ I was ecstatic he was so happy.  I didn’t get the full lowdown till after school as he was picked up by Grandad Rob and taken straight back to school for lunch.  But I could tell he loved it so much so he was going back next week but for a full day.  The following week was the same he loved it and the school was really happy with the way he managed to get around and there were no problems – so it’s all looking good for September.  He does have 1 more day in June when all the children who are due to start in September go up for the full day – so that will be interesting.  

Ben has a 2 more visits to IGS in June but these are with the rest of his school and are more fun than just before!

Ben was also looking forward to the SDR party in March in Daventry.  90 families 76 Dr Parks’s patients, 3 Mr Aquilian’s patients & 11 pre op.  We were all so excited to be able to finally meet face to face all the wonderful people who have been supporting us through our SDR journey & family who we have helped too, it was going to be great for everyone.

We had arranged to stay in the hotel Friday night as well as Saturday so as soon as Damian was home from work we were off.  2 hours later we were checked in and talking to some of the families who were like us there for both nights.  I felt great been able to speak to so many friends who have all been on the same journey – if somehow all also a little different in their own way.

It was one of the best weekends we have ever had I think Ben put it in the best words possible – ‘For once I felt ‘Normal’ the same as everyone else...

We had chance to catch up with all our friends, The Wardleworth’s, The Whitton’s & The Lawrence’s, The Storr’s to name but a few.  We spent the evening sharing stories, laughing & joking and meeting Dr Park for the first time in over a year.  

Calendar News sent a cameraman to follow us for the first part of the evening –Click here to see it!

http://www.itv.com/news/calendar/story/2012-03-19/life-changing-surgery/

Thing we all going well and things seem to settle down and we had a calmer time.  Ben contained to improve his mobility still only using his walker on a Friday lunchtime for football, I wish he would realize he can do it as well if not better with his crutches.

Ben has also started to run, He surprised not only me but also his physio and ran down the drive – he was amazing a quite quick too.  I will post a video soon.

We still have the endless struggles of getting good shoe inserts that support his feet and easy to get in and out of his shoe and also shoes that give him the support he needs for his weak ankles!

We also looked into our return to St Louis – this is not essential but we feel that we will all benefit from returning.  Hopefully get Ben inserts sorted and a couple of PT session and also to see all our friends.  Plus the weather will be 100% better and warmer.  

I can’t quite believe Ben has only 6 weeks left at primary school, the time has just flown – Then starts another big chapter in Ben Journey!!

Who knows what will happen next in Ben SDR adventure but for sure his future is looking a whole lot brighter!!!

One year Anniversary!!!

Well One Year ago today Dr Park & his amazing team changed Ben’s life FOREVER. 

Just before his surgery

In ICU just after surgery

First PT session

Still in pain!

Getting stronger only on day 5

Back at our American home - all smiles x

The decision to take Ben to America was extremely hard for all of us as it is for any parent ~ But knowing he was being treated by the BEST TEAM in the world, there was really no question at all.

It was a hard 5 weeks in America, but with the amazing support from all at St Louis Children’s Hospital, The Wardleworth family & also the lovely Charlie & Tina from Calendar News.  We got through it and made in home for the ‘REAL’ hard work to start.

Ben has had an amazing year with many many changes not only with his mobility.  He has become alot calmer & able to focus on his academic work more and he is achieving so much more in all areas. 

We have good days and bad & I’m sure there are many many more still to come.

Looking back a year ago and think how Ben was racing around dragging his feet with his walker knees knocking each other but still with a huge grin on his face.  Were as today he walks taller unaided for the most part of the day, they using his elbow crutches for the rest of the day.  His walker only sees the light of day on a Friday Lunchtime for Football on the MUGA (Multi Use Gym Area!) which is amazing.  He is wanting to walk more and more unaided which is amazing to see and what’s more I can now walk beside him and hold his hand ( he doesn’t really like me doing it I think he’s just humouring me for a while!)

Lot of Firsts for this year!!!! 

Well we are so very very proud of him in so many ways I could burst sometimes – especially as I see him walking with his friends and laughing.

Who knows what will happen this year but it’s a whole lot rosier now!

Thank you everyone without your help he would not be where he is now, from the bottom of our hearts we Thank You J

A Message from the Man himself (short & Sweet)

Charlotte, Damian, Jacob & of course Ben x

Hello 2012!!!!

Well as we look back over 2011 are reflect what a mixed year it has been – but one thing is for sure we will NEVER EVER FORGET!

Ben & the AMAZING Dr Park

As we entered 2011 we were heading for Manchester Airport to start on our journey to St Louis to see the amazing Dr Park, to change Ben’s life FOREVER...

Christmas 2011

We did not anticipate just how hard a journey it was going to be, but as always we put our all into it.  We met so many amazing people along our SDR journey in America. Dr Park & his team were amazing for start to finish – this made our decision so much easier and confirmed we had made the right chose for Ben.

Not forgetting Abby Wuellner from SLCH media team (& Brad the videographer) again one amazingly lovely lady who we can now call a friend.  Erica & Mad Mike PT from SLCH without you helping Ben from the beginning he would not be where he is today, you made the early days of PT easier for all of us. Dr Dobbs & his team made PECS’s surgery so quick and easy for Ben and enabling him to walk on flat feet for the first ever.  Charlie & Tina from Calendar News (& everyone else back in the newsroom) were not just people following us with a camera but became an amazing support in America and now we can call friends (they may disagree!). 

As we enter 2012 things are so different in many ways then last year, we cannot express how truly grateful we are to everyone who help us not only get Ben to America but supporting his aftercare – which has been so vital in his progress to where he is today and where he will be in months to come!

Ben has another exciting year ahead with only 8 months of primary school left, Grammar School is calling.  We have lots of meetings and visits planned to help his transition go as smoothly as possible and give him the best start to the next step on his education ladder.  No doubt there will be more swimming achievements & even a few karate ones to add to the every grown list.  And hopefully we will see the return of the walker back to the physio department from where it came...  Ben only uses it for football at school; we have not had it out of the garage since the end of last term, but it will only be when HE is ready to do it!  Fingers crossed we will be returning to St Louis to see everyone again for Ben’s 1 (ish) year on check up.  We also have the amazing SDR party to attend in March with some 70+ SDR families a some of the American team as well – Dr Park included which will so lovely to see everyone.

It goes without saying that we are so very very proud of Ben and all he has achieved this year, he really is one in a million xxx

All that’s left to say is a very HAPPY NEW YEAR  one & all. 

Let’s hope 2012 brings us all that we want it to and a few other bits as well.

Charlotte xx

Merry Christmas one and all xxxxx

Newsletter

Another HUGE Step Forward

Today we had Ben's final annual review at Primary School. This was also to discuss his transition for Grammar School next Year!!!!!!  I was, as always, a little apprehensive about it but we were completely put at easy by the amazing support team he has had and still has from his current school but also the new school was amazing - We are lucky to have a great team behind Ben all wanting the best for him and willing him to achieve all his goals he has set out!!!

They have recommend a few exciting things for him next year to help with the transition which he will find amazing and love them for sure.
As a whole we have been so lucky with all the help and support we have had from everyone who helps Ben along the way.  We still have a long way to go before September but now the wheels are well and truly in motion for the next stage in his life. 

Without any doubt Ben's review would have been SO very different had he not had SDR, we are looking at a far more accessible timetable - well they don't think there will be anything he will not be able to do (well maybe not the cross country!!!) we are so pleased for him and know he is so keen to make this next move in he's life.  

It's safe to say Ben is the person he is because of the love, encouragement & support he receives from everyone who he comes in contact with over his 10 years –  

WE THANK YOU ALL xx

Oh Ben is the Inn Keeper in the KS2 Christmas Concert!!!!! 

PS I Didn't cry at the review ~ First time EVER!!!

The Last 3 Months!!!!!!!!!!!!!!!!!!

August ~ Holiday Time

Well the time came finally come for us to go on our family summer holiday – we were all so looking forward to it, it’s been a long time coming.  What makes it all the more special is we are going with our friends so we can have even more fun!!

So the bags we were packed and a very early start of 4am!!! The boys were excited if a little sleepy.  We had asked Ben what he wanted to take with him & decided to take everything wheelchair, walker & crutches.  A couple of years ago we had a incident on our return journey from Spain, Ben’s walker got mangled so we had a special box made to carry it safely when we travel.  Ben was still less confident on his crutches and with all the waiting around in the airport we thought the wheelchair was the best option and everything else in his box (thanks to Grandad Rob).  We arrived all excited and we had been given one of the biggest apartments so we had plenty of room to move in.  The boys wasted no time at all in getting changed and into the pool – where they stayed for 2 week, well it felt like that.

We had one of the best holidays we had ever had – Ben swam nearly 5 hours a day growing in strength and confidence and walked lots both with & without his crutches – although the tiled wet floors are not crutch friendly we had a few accidents!!!

Ben had been granted 2 weeks off physio much to his delight!!! I did however do a few stretches as he asked (a first) to do a few when his hamstrings where feeling tight!  

The only disappointment was we only managed 2 trips to the beach, the boys decided it wasn’t for them.  Ben’s eczema seemed to flare up badly with the mix of salt water & sand.  As for Jacob’s aversion I have no idea! ~ may be he gets it from me.  Luckily the pool was great and the boys spent all their time in the there.  Both of them gained so much more confidence in the water ~ Ben did not realize the swimming is actually physio.  All too soon like most things it was time to go home.

Back home we had 2 weeks breathing space before the new school term started.  But for Ben is was back to physio ~ his first couple of sessions went well & it was not back up to his full 5 sessions as some of his physio’s were still away.  I was also pleased to hear that he had maintained his muscle tone & his trunk strength had increased (that would be the swimming then!)

Possibly the most exciting thing on our return was our new addition to our family.

LOLA.....

We had only been back in the UK for 4 hours & we were off to collect her.  She was so pleased to see us ~ well the boys thought so.  She is such a lovely natured puppy & has sorted the boys out straight away ~ knowing she can be a little bit mad with Jacob but more chilled with Ben.  She is not fazed at all by Ben’s walker, crutches or wheelchair which is one of the reasons we chose her.

SEPTEMBER ~ New School Year 

Ben was equally excited & nervous about his return to school as we had made an agreement that his walker would stay at home and he would only take his crutches.  This was by far one of the biggest decisions Ben has had to make in his life.  Ben has had his walker since he was 2 ½ years old & effectively it has been his legs for 8 years.  In his words ‘It’s part of my body ~ it’s my legs’  So for him to not only agree but to do this we were so very very proud of him & determination to successes.  

Our friends Charlie & Tina from ITV Calendar News came to do an update on Ben; Ben was on fire the day they filmed he really showed everyone what he could do.  We also got to going into the studio to have a catch up with everyone which was again lovely as we saw so many familiar faces.

So with a big struggle we got ourselves up and organised & ready for the new school year.  Ben was entering the school for his finally year at primary school Year 6 here he comes!!!! ~ The beginning of the end of another momentous chapter in his life.

Ben as always through himself into the new school year and with an average of 13 ½ hours a week physio/activities he still carried on full steam ahead.

Ben seems to have changed again more so mentally, his new found confidence and as always his very quick sense of humour.  I feel our relationship has changed; we spend alot more time chatting & laughing Ben seems to be able to express himself more.

Ben had a full timetable of activities

Monday        ~                 Cycling Proficiency, Football Training & Swimming

Tuesday       ~                 Physio & Karate

Wednesday  ~                 Wheelchair Basketball

Thursday      ~                Physio at the gym

Friday          ~                 Physio & Football

Saturday      ~                 Physio & Aqua Therapy

Sunday        ~                 Horse Riding

He also has 30/40 minutes of physio & school every morning before class start ~ we had it added to his statement 4 years again ~ one of the best things we ever did!

One of the highlights this term was Ben was able to play in his first football match for his school – We did not realise he was until we got to the game and he went on for the last 5 minutes.  He was so proud to not only wear the school kit but to play for his school...

Not the best quality as it was filmed through a door!

We had a very important visit this month – Ilkley Grammar School open evening.  Believe it or not Ben will be moving to Big Big school next year (MAD!) and it was time to start looking – but there only is really one option IGS...  Ben was a little anxious but excited to see where he would be going.  The evening was great & more to the point Ben LOVED it, so that is another thing we don’t have to worry about.  I just need to liaise with the Learning Support Team over the next couple of months to make sure everything will be in place for September.  My only concern is that he site is huge & how well Ben will manage it is unknown.  But we just hope over the next 10 months he can grow stronger & stronger.

October ~ More of the same!

Ben is growing in confidence & strength everyday & you can really see it in everything he does.  Things that he needed help with before SDR he now can do it himself.  For instance every morning I would walk with him to the door, help him down the steps & then to the car.  Now he does it all himself which is just amazing.  We are so proud of the effort he puts into all his activities he is really trying hard even when he’s tried & would prefer to be sat in front of the TV.

The added bonus of this month is half term – which we were all looking forward to.  We didn’t really have much planned but a trip to Hesketh Farm with our great friends & cousins was a highlight.  Ben managed 4 and half hours of nonstop walking without crutches – Yes we had a few falls but he did it and what’s more he wanted too...

The rest of the week was just chilling not doing much also Ben had a bit of time off from physio as well which I think he liked.

Before we knew it we were back at school & back to the same routine.

Ben seemed to have new found energy for his physio & activities and wanted to get on and do the best he can – which is so great to see & it make my life easier.

Halloween was interesting as Ben wanted to walk around without crutches he managed around the cul-de-sac & half way down the snicket in the dark as well...

In School Football Kit

Check out his straight

Standing on one leg!!!

Horse riding - On Solomon

Alot has happened over the last couple of months – Ben makes me glow with pride each and every day. He has put in so much effort in and hardly ever complains.  He is so determined to reach his Wish To Walk I know he will do it.  

Charlotte xx