Half Term......

Highlight of Saturday night – Ben was stood next to some of his class mates and he is taller than a few of them now, he has hated being the smallest in his year group.

Sunday 20^th Feb

Ben & Damian went swimming today – the first time since his Op, they took his life jacket.  On his return he was so excited not only had he been in the big pool but he did not use or need his jacket.

He did tell ‘I feel normal mummy, you know back to how I was before’.  This was lovely to hear as he did find it hard last week.  The rest of the day was just chilling out playing games and a small bit of physio as it is his day off.

Monday 21^st Feb – Auntie Katie & Uncle Adams Wedding Day!!!

It was our first day off together and what a miserable day it is too.  Thought we might manage to get out for a walk!! Oh no mother nature had her own ideas...  My sister was coming to play with my nephews but other than that the day was free.  We managed a few stretches before they came & his tried hard with them and didn’t moan much!  We agreed we would finish off after they had gone home.  Ben decided today walk bare flat footed he took about 10 steps.  I think something has finally clicked & he feels a lot more comfortable and what’s more – more confident.

Tuesday 22^nd Feb

Physio was changed today to early morning leaving the day free.  Ben had struggled last week so I had a little chat with him before hand and made sure he was feed & watered as they is often one of his excuses!  But Ben behaved & worked so hard this morning – he makes me so proud to see him not only managing all his exercise but laughing and enjoying it.  The rest of the day was nothing exciting, we ventured out in the afternoon if only to stretch our legs, Ben managed about ½ a mile walking in town, and I was so pleased. 

Wednesday 23^rd Feb

Today was full of visitors it was so nice to see friends & family.  Ben has started with a silly tickly cough I hope it don’t turning into something more!!  Physio today was with Anna but not till later in the afternoon. He worked so hard for her doing exercises I have never see him do before, I was very impressed.  She also taught me a few more to help me make his physio little more fun.

Thursday 24^th Feb

Busy morning for us – first it was a visit to the CDC (Child Development Centre) for a video assessment.  Ben had one done before we went to the US, they are doing another now & then one 5/6months time.  They were really impressed with him, all his measurements had improved and some greatly.  He managed all the tasked they asked him to do but strangely he walked better bare foot than with his splints on!!!  Then it was a quick rush home to be there for Laura for physio.  Again Ben worked really hard and I have been shown even more new exercises to push Ben.  As I have to do Fridays & Saturdays physio sessions this week to I need a few tips & ideas to make it more fun for both of us!.  Grandma Linda & Grandad Rob arrived back from Kenya; the boys were so pleased to see them as we all were.  Not long now till we can celebrate Auntie Katie & Uncle Ad wedding too.

Friday 25^th Feb

Last day of half term, loads of things we have not managed to do this week, but hey ho!!

Today it’s was over to me for physio – I had made an arrangement with Ben that we would break it up to 2 sessions, 30 minutes of stretches then 30 minutes of balancing/ walking practice.  I have also agreed (in a weakened moment) to giving him money incentives for good session, and so far they seem to be working.   I had friends calling round for a bit in the afternoon so that was nice & the boys took advantage of the nice weather & played outside for a while.  He managed to walk to Booths & back in the afternoon.  A lot of encouragement was needed as he seems to be finding it harder this week, but I guess we will have good weeks & bad weeks but he is still making great progress.

Saturday 26^th Feb

Today we went to see Gnomeo & Juliet 3D, as we have a quiet week & they deserved a treat.  Ben has been walking well this week but he is finding it increasing uncomfortable to walk in his splint and walking better (his words) in bare feet.  We did his stretches before we left; I find it easier to break up his physio not only for him but for me as well.  Then we were off to Leeds.  Both boys love the movie as we did, when we got back it was time to finish off physio, 20 minutes on the treadmill, he only managed a speed of 0.6mph but it was great walking.  Then a few sit to stands & we were done. 

The rest of the day was chilling and finishing off any homework left to do as it’s back to school on Monday for all of us.  I will be going back after 10 weeks off, man is it going to be hard, at least it’s only mornings.  I think I will be able to just about manage that.

Charlotte xx  

Back to Normal-ish!!!!!!

Sunday 13^th Feb

Today should have been Ben’s day off physio but as he was going to his friends house for tea tomorrow it had to be done today, he wasn’t best pleased but managed really well.  Today was the usual getting ready for school, home work, reading books & uniform to get ready.  We had a lovely roast dinner together – life is pretty good.

Monday 14^th Feb ~ Valentine’s Day!

It was another struggle to get up this morning the boys had to be dragged out of bed, as I did too.  I am getting use to this housewife role!! But there is one problem I HATE CLEANING so I don’t think it will last!  The day passes by so quickly & before I know it is time to collect the boys from school, well Jakey anyway.  It was lovely to see Ben so excited to be going to his friend’s house. 

Tuesday 15^th Feb/ Wednesday 16^th Feb/Thursday 17^th Feb/Friday 18^th Feb

To be honest Ben has really struggled this week, but we were expecting this as we had a fantastic homecoming week last week and then the reality of day to day life/school & daily physio was bound to have this effect.  He got a little upset during Tuesday’s physio session, which was hard for both of us, he is just so exhausted and it’s all a struggle.  He did find it in him to finish physio and he does pick up towards the end of the week.  I know he want to do his best but as he has nothing in reserve to give that’s when we get these little events.  He has been through so much over the past 6 weeks I cannot even imagine how he is getting by.  He never wants to show weakness and always gives his all but when you a have nothing left to give that’s when it all crumbles. We are all so conscious of this and we are trying to encourage & help him as much as possible.  The thing he has found the hardest is that he has lost a little of his own independence he had before.  We know it will not be long before he is back & even past where he was, but as we are now it seems a long way off.  A least we have a week off school next week so he can try to relax and get his breathe back!

 Saturday 19^th Feb

Another busy day today lots happening and for some reason we have loads of snow, whats that all about!!!

First off is physio with Laura, then a surprise visit to some very special friends! Then we have a children’s music concert that are supporting Ben.

The physio session started a bit bumpy but he soon got into it, and finished of in amazing style managing 12+ steps several time.  When I watch him it is just amazing to see him standing tall, knees locked back straight (most of the time) & when he walk it bring tears to my eyes.  He wants to able to walk but it is so hard to do all this physio, he only sees little rewards, he doesn’t see what we see.  But walking is a huge reward for him. 

 Sit to stnds without using his hands!!

Next was a surprise visit – the boys were so excited as I had not told them where we were going.  As we got closer the boys knew we were going to the Wardleworth’s – they were so giddy.  When we arrived all four children were shouting & cheering, it was so lovely to see & for me to see Lou was just what I needed after this week.  Ben & Belle showed each other their new tricks then it was splint & shoes off & off to play.  I got chance to have a really good chat with Lou, I am so lucky to have her to talk & call on any time.  Before long we had another 2 visitors Lou’s parents who had also been in St Louis, it was so lovely to see them as well, the only people missing were the boys!

After a wonderful could of hours it was time to go, none of us wanted to go but we had to go to the Concert.  Ben left it till we were just about to leave to walk the length of Lou’s corridor then into her front room, about 20+ steps he just is amazing we were all so proud of him.

The evening was a Gig from the ‘Learn to Rock’ school – the boys loved it, loud music, drums, electric guitars & singers they thought it was wonderful.  It was a long night but love to see & hopefully some money towards Ben’s physio was raised.  

Who knows what will happen next week, it half term so it should be a quiet one!!

Charlotte xx

First Week Back Home.....

Now we are back I will be blogging weekly

Sunday 6^th Feb

After 14 hours sleep we were all ready for action well just a normal day and normal food!  The boys were happy just playing and watching TV, we had a few more visitors Cladam (Uncle Adam) & Katie, Grandad Frank and The Murrays.  It’s so nice to see everyone; Ben loves it as we all do.

The afternoon it was time for Ben’s physio session, I was not looking forward to this as he had not done much walking or any stretches for 2 day!  But as always he pulled it out of the bag, we did 10 minutes of stretches & 10 minutes on the treadmill.  Ben now uses his iPod & headphone on the treadmill – looks so cool!

As (fingers crossed) both boys are back at school tomorrow so again bath & early bed for us all, oh and Damo is back at work.  I however have 2 weeks off to help settle Ben back into school. So I wonder how we will all get on!!!!

Monday 7^th Feb

How hard was it to get up for school/work this morning!!!  The boys were very excited to be going back to see their friends.  Ben was a little nervous he was worried he would have forgotten what to do in school.  We were greeted by balloons & a banner, then the wall of pictures from the blog – I felt emotional to say the least!  After a chat with all the staff the boys were off.  I did feel a little worried but they all seemed happy – I had thought I would get a phone call to ask me to pick him up – but Ben being Ben stayed the whole day.  Which turned out to be a HUGE mistake, he had (understandably) a massive melt down when we got home.  But we did get to do a little pyhsio, & 6 mins on the treadmill.  Early bed for 2 very tried boys and parents too.  Jacob is so glad to be back into a routine of daily life, he is glad to be back with his friends. 

Tuesday 8^th Feb

Ben looked so pale this morning & total exhausted so we agreed I would pick him up at 1pm today.  Tonight Calendar News will be airing the first part of Ben’s story, feel a little sick & nervous!!!

The morning routine was a little better today; think we are falling back into life at home again.  The day flow by & before I knew it, it was time to pick Ben up.  I have to say Ben’s school have been AMAZING, let us do whatever we needed to settle him back into school life.  He had a photo shoot & interview with the Ilkley Gazette & Telegraph & Argus.  Jacob was going to a friend’s house for tea so Ben could concentrate on his first physio session.  It went well & the hard work will begin next week.  We all nervously sat down to watch Calendar at 6pm, emotion overload – it was amazing.

http://www.itv.com/yorkshire/bens-wish-to-walk-115842/ 

Wednesday 9^th Feb

Today the boys were back on the bus so it was an earlier start.  Both boys were off & sorted.  During the day I had a phone call from Ben NHS physio, saying she wanted to see Ben at 3pm – so I arranged to pick him up early.  It was great to see her, as I had been worried about this week as we had not managed to do as much physio as I wanted & thought he needed.  She immediately put my mind a rest which I needed.  He showed here all of his new tricks, she seemed impressed.  Then we waited for the next part on Calendar, it’s the strangest thing watching it as I know what happened but somehow you forget things.  We were all in tears again.  We did have a visit from Charlie & Tina, for our final interview to go on Fridays piece, it was great to see them both.

http://www.itv.com/yorkshire/bens-wish-to-walk-202494/ 

Thursday 10^th Feb

The boys really struggled to get up this morning as we both did, jet lag is not fun.  So another day, Ben managed another full day, but was a tad grumpy when he got home.  We though his physio was coming but there was a mix up so it was over to mummy for my first ‘proper’ session.  Ben did really well he just doesn’t like me commenting on what his is doing.  Then again it was time for Calendar, it has been amazing to watch & all the wonderful messages from everyone have been lovely.  More tears were shed...

http://www.itv.com/yorkshire/bens-wish-to-walk-355182/ 

Friday 11^th Feb

Glad it nearly the weekend, Ben found it so hard to get up this morning until he remembered we were off to the Calendar Studios tonight.  Ben was seeing his physio in school today to help teacher all his support staff his new exercises, She was still there when I arrived to pick up the boys, all seemed to be going well.

They boys were so excited to be going to the studio, Ben had been before but it was Jacobs first time.  We were meet by the lovely Tina, it was so good to see her.  Upstairs we meet the whole team, and then the boys were taken to look at the studio & the gallery which they both loved, 2 very lucky boys. 

Duncan - Someone is after your job!!!!

Calendar's new camera man!!

The new Directors!!!

2 very special friends - Thank you so much xxxx

We had a quick word with Kate & Duncan before the interview – then we were mic-ed up and we were on.  Wow the boys were great as always and that was that, we had a quick chat then said our goodbyes & thank you’s then we were off.  It was a very strange feeling; it had been a great distraction for me, something else to focus on but now it just us & the day to day challenges of any family.  Jacob fell asleep in the car on the way home Ben was to excited to see the programme.  When we got home it was TV on to watch Calendar – Again it was amazing, we cannot thank Charlie, Tina & everyone else involved in the whole programme enough for what they have done – Thank you from the bottom of our hearts XXX

http://www.itv.com/yorkshire/ben-smithson-final20049/

Saturday 12^th Feb

Another day another physio session, Ben worked so hard today I was really impressed with him.  When he is ‘In the zone’ he pulls all the stops out.

I can clearly see a huge improvement already.  The afternoon was just boring jobs around the house so Ben got chance to play on his new Wii game.  He managed to done 10 minutes on the treadmill at a speed of 0.8 – Fab.  But later he stunned us again; he stood/balanced while pulling up his trousers then walked 9 fully controlled independent steps.  No stopping him now!!!             Just Love him soooooo much.

All in all this week has been hard, but we have all a survived – Ben has been his usual self & thrown himself into being back at home.  Jacob is lot more settle now back into a normal routine.  The bonus we have is to have another family a phone call way, who are going through the same thing as us.  This is such a wonderful thing to have and I think will keep me sane – Thank Ben, Lou, Amelia & Belle xxx

Charlotte

Day 1/2 Back Home!!!!

Saturday 5^th February we are back at home wow what a mad couple of days – today will be interesting to see how we all cope with this jet lag thing we know is on its way!

So we settled in to home 4 bags still staring at me waiting to be unpacked wonder how long it will take me to unpack them!

After the usual phone calls to let people know we are home, our first set of visitors arrived, my Mum & Dad the boys were so excited to see them as I was.  Not long after Grandma Linda join us – Ben excitedly told them all about his adventure.  We also found (on line) the promo for Ben’s story that will go out next week on Calendar News – I cried, it looks amazing, can’t wait.

Then the house was quiet for a while at least, my adorable nephews Jim & Jon came. We have missed them so much and Em & John as well, they played for a while and we chatted, it so great to see everyone.

It is starting to feel like we have never been away it so nice being home.  The cases were shouting so I went off to unpack.  Damian I may add had manage to sneak out to the pub for a couple of hours!!!

So the evening we a quiet one, bath and early bed for us all – I had been awake for 30 hours by the time I fell asleep.

Sunday!

After 14 hours sleep we were all ready for action well just a normal day and normal food!  The boys were happy just playing and watching TV, we had a few more visitors Cladam (Uncle Adam) & Katie, Grandad Frank and The Murrays.  It’s so nice to see everyone; Ben loves it as we all do.

The afternoon it was time for Ben’s physio session, I was not looking forward to this as he had not done much walking or any stretches for 2 day!  But as always he pulled it out of the bag, we did 10 minutes of stretches & 10 minutes on the treadmill.  Ben now uses his ipod & headphone on the treadmill – looks so cool!

As (fingers crossed) both boys are back at school tomorrow so again bath & early bed for us all, oh and Damo is back at work.  I however have 2 weeks off to help settle Ben back into school. So I wonder how we will all get on!!!!

Charlotte xxx

Homeward Bound!!!

Packing took a little longer than expected so it was a really late night for us.

I did not have the greatest night’s sleep but all the boys did!

So the alarm went off at 7:30am so it was a strange feel knowing that this was it and we were going home.  The boys needed a rather large prod to get out of bed.  So we hurried around getting the apartment all clean and tidy – Damian took all the bags down to the car & all the left food/toys we were taking over to the Residence Inn to pass on to other UK families who are staying there.

The boys were a bit quiet, I had a quiet word with Ben & we both had a little cry – we were excited to be going home but said that we were leaving America our home for the last 5 weeks.  Abby called by to say good bye before she headed to work. 

So a quick nip down the St Louis Bread Company for a coffee & chocolate milk then it was off to meet up with the Wardleworth’s.  A quick stop and back in the car and off to the airport.  The ‘BIG’ boys (Ben W & Damo) dropped us off & the took the hire cars back, which ended up taking a little longer than we thought, check-in was smooth-ish need to pay a little extra for our luggage (these Build –A -Bears!) then we look at the screen our flight was delayed an hour, so no rush needed off we went to departures.

In departures the wait got longer – We had a 3 hour gap between flights in Chicago – but this was slowly disappearing!! I was little panicked but Damo kept asking the America Airlines desk & they seemed to think we would be fine.  The plane was very late, but this time all of us had had enough and just wanted to get on the plane & go home.  

How to entertain yourself at St Louis Airport - Static hair - Just love it!!!

It finally arrived and we were boarded first – I was not happy as we were split up Damo & Ben at the front & Me & Jacob at the back!, but it was only a 47 minute flight so I could deal with that.  We sat on the tarmac for about 45 minutes while they took ages to load the bags & then they had to hose off ice/slush from the wings.  Out gap was getting smaller!!!

We finally set off on our short flight, landed at Chicago and looked at the clock it was 6:05pm, we had missed our flight.  To make matter worse they took forever for us to get off the plane.  A very kind American lady on the plane let me use her phone to ring American Airline, yes out Manchester flight was delayed 15 minutes – great but it was already 6:20pm!  As we rushed off the plane we were greated by 6 grounds staff there to say – We have held the plane for you!

Music to our ears so all 10 of us rushed to the departure gate, passed over boarding cards and we were on.  More luckily we had spare seats next to us so the boys could lay down.

Well due to the wind the flight time was 6hours 40 mins so even due to our delay we would land at 7:45am in Manchester.

The flight was non eventful really – which was great both boys slept and all was great.

We landed in Manchester to rain, which I was glad to see.  Then off the plane through passport control and off to baggage claim.

All items collected plied up on the trolleys it was then time to say  very said good bye to the Wardleworth’s – what a journey we had all been on, so hugs & kisses all round & we were off to find our taxi.

We arrived home at 9:30am to be greeted by a banner saying Welcome Home – it’s good to be home.

Ben's power nap before bed!!!

Charlotte XX  

So Long St Louis......

Today was an early start as we had our last PT at 10am but we needed to visit The Cup – a cupcake shop around the corner to collect some cupcakes for Erica & Michael to say Thank You.

When we arrived then Belle, Lou & Ben arrive shortly after so we handed over our gifts which I think they liked!!  So on to PT, Ben had Michael and it was fun session!

They both had great time – Ben laughed the whole session.  Michael was his usual self & told us we should be proud of not only Ben but ourselves, which was lovely to hear.  He told Ben what he need to do and what exercise he could do at home to help – and that was that.  It was lovely that Ben & Belle has PT at the same time; we all meet together at the end for pictures and hugs & a few tears mainly when we say Ben helping Belle to climb the climbing wall, so cute.  Then that was it all done!!!

So what to do on our last day – go home and pack NO go to the Magic House & have fun.  So that’s what we did all 10 of us! We had the most amazing 4 hours in there the children loved it as did the adults.  The off for our last meal in America so Longhorns Steak House it was.  All stuffed we headed home eager to pack – NOT!!!!.

A magical way to end our American part of Ben journey.

This time tomorrow we will be in the air – fingers crossed as flight have been cancelled due to the huge snow storms but looking good so no blog tomorrow night (sorry Julesie) but I will fill you in when we are home..

_______________________________________________________________

Well 5 weeks ago we were heading out here to change Ben’s life forever – and now we are heading home :( :)

What can I say – well I think I have said a lot really but it has been on hell of a journey for us all.  We have had are highs and very low lows but we are stronger & wiser!

We have been so lucky to meet the most amazing people along our journey, and wish to thank them for helping us ALL.  Firstly the hospital staff – Dr Park & his team - Dr Dobbs & his team -Erica (from America) Pfeiffer  PT - Michael (The Mad) Kenyon PT – without all of these people Ben would not be able to achieve his goal of walking without aids.  They have been a wonderful support and helped us at our lowest points to see we DID make the right decision for Ben to have SDR.

Next comes our very special friends the Wardleworth family – what can I say they are amazing people who have shared all our emotional moments along Ben SDR journey, they have been there for not only Damian & I but for Ben & Jacob.  We could not have done this without them.  We have laughed & cried (lots), so many times throughout our 5 weeks – the best thing of all Ben has had a very special friend Belle to share his SDR journey, who knows exactly what he was going through.  We are so very grateful to them & hope we can stay fiends for a long time. THANK YOU XX

And finally a HUGE HUGE THANK YOU to everyone who helped us get here – we cannot put into words how truly grateful we really are.  All I can say is we have made the right decision to do this for Ben & he has worked & will continue to work so very hard to achieve his goal. Thank you again.

See you on the other side!!!

Charlotte xxx