A Wet & Windy St Louis.....

We woke to the news that a huge winter storm was on its way over the next 24/48 hours the whole state is on alert!!!  So we watched the news for the most of the morning, but we only saw a lot of rain and a bit of wind.  They kept talking about freezing rain – something I have yet to know what it is and to see it!

We thought that Ben had PT at 10am – but it was 2pm that will be the last late one.   Damo was again on duty to day with instructions to video & take pictures.  So off they went in the rain – well actually they took the car. 

So Jacob & I got down to housework & school work, the wonders of modern technology means that Jacob can still do his school homework online, small world.  We decided to treat ourselves for all our hard work & made some brownies, always a winner.

We Skyped a few family member to catch up on gossip & to let them know our return flight details, as its getting so close now returning to reality....

I was getting a little worried as Damo & Ben had not return from PT, then I got a text they were having coffee with Evan, Lynda & Andy Whitton as Evan had PT the same time as Ben.  By all accounts Ben was making Evan laugh lots.

Then I got the run down on what had happen during PT, Ben had work hard – what else would you expect he managed 20 mins on the treadmill, lots of standing balance, Total Gym & taking steps with a little support. They had lso called Keith again as Ben splints were still hurting his ankle so he came to sort it, hopefully for the last time.

They also came home with all Ben hospital notes (Auntie Em will enjoy reading these) which were really interesting to read.  Ben seems to be improving not only daily but hourly & he is really conscious that he will be back at school a week today & want to show his friends how well he is doing & how tall he is now – we think he is at least 3 inches taller, because he now stands tall and he is not to crouched & his legs are straight.

The afternoon was nearly gone by the time they came home, so we did a bit of sorting, organised for the rental car to be dropped off at the airport & thought about packing, then I though again I’ll do it Thursday!!!!!

Ben had a good knack of pulling surprises out of the bag & tonight was no exception, just after tea he & Jacob were plying when Ben walking into the kitchen using his sticks!!!  I tell you this boys is unstoppable – yet again one proud Mummy.

Well who knows what we will wake up to in the morning – there could be loads of snow or who knows oh well that’s life.

Charlotte xx

Ben Says A few Words.........

‘The food here is delicious, yummy & the portions are huge.  I feel fine now after both operations – Thank you Thank you Thank you for supporting me on the biggest journey of my life, I could not ask for anything more.  You have been brilliant in supporting me Thank you so very much.  I wish you could have all come with me.  PT is hard but I know it is helping me to get stronger.   Special Thanks to Tina & Charlie (Chalk & Cheese) for coming with us and making us laugh lots & lots. Can’t wait to see you all Thank you once again’ – Ben xx

Jacob wants me to let you all know that Dylan (his Bear) has had his own surgery today to repair a hole in his back – He’s on the mend now!!! Jacob xx

It’s a good job they wanted to say a few words as today has been very quiet day & not much to report really.  We are now starting to think about coming home as we only have 5 days left!!! That has gone so quick, but I think we are all ready to come home and get back to normal life, well as normal as we can get.  I think the packing will be interesting as we seem to have acquired a few more soft toys!  

I decided to do a ‘proper’ PT session today as we have been a bit lacks of late.  Ben was not impressed at first but soon got into it when he was he could do things he could not do before SDR.  When he focuses he really does try hard I know this will be a huge challenge once we are home – but fingers crossed he will be fine.

I did manage to get to the gym & in a weaken moment via Skype agreed to a mini Triathlon!!! Thanks Em....  & I have finally signed up for the Leeds 10K again this year – so as soon as I get home I’ll be out running the street of Ilkley.

We have a few things plan for our last few days but I am slightly worried as there seems to be a HUGE snow storm on it way due Tuesday into Wednesday so we will see how that goes!!!

Anyway off to bed as it’s back to PT tomorrow

Night Y’all...

Charlotte xx

New Trainers For Ben......

The main aim for today was to find Ben some new trainers as now we have his new splints all sorted his shoes no longer fit.  This you would think is an easy job in America the land of trainers but unless you want high tops or girly flashing ones you will struggle.

We spent the morning chilling, I still not make it to the gym – I am going to regret this when I return home, ouch!!!!

Anyway we caught up with Auntie Em & my gorgeous nephews who were more bothered about seeing Ben then me, what’s that all about!!! Then a quick breakfast & off to find trainers.  We had decided to try ANOTHER mall to see if they had more to choose from. 

I have to say Damo is getting really use to the America way of driving, I hope he can change back to UK driving as soon as we get home...

So we headed down the I-64 to the Chesterfield Mall, the boys were chatting away in the car as usual singing along to radio 1 – thank god for Sirius Radio in the car is all I can say.

Well another day another mall, but we had a mission trainer were to be found.  Well believe it or not the first shop we tried had some – Ben liked them & more importantly they fit (UK size 4.5!!!) Ben was so cuffed at the chap in the shop said they were new out and this was the first pair they had sold.  As we cam e in Jacob spotted a Trampoline/Elastic thing he wanted to go one, using his pocket money & Ben spotted the Carousel that he fancied a go on.  I tell you these American Malls have everything. 

So after a spot of lunch ( which may have been the wrong thing to do) then off to have some fun – first Ben had a go on the Carousel – He loved it, then Jacob the Acrobat had his go, one of the funnies things I have seen for a long time.  Then the plotting boys decided one last go on the Carousel together – which was a HUGE mistake........

The thing they choose was a spinning cup; I bet you can tell where I’m going with this.... Ben came off looking green!!!!  Jacob had been spinning the cup really really fast and Ben had banged his back on the side of the cup – it was time to go home.  I sat with Ben the whole time with a bag at the ready.  Man he looked so ill, I was a little worried that he had done some real damage to his back but Damo assured me he was just tired & a little dizzy from the ride.  Lucky it was only about a 30 minute drive home.  Once home Ben went for a lie down as we had been invited to watch Nernix High Schools basketball team play a game this evening, one of their coaches is Ben’s PT Erica. 

After about an hour we woke him got sorted & headed out to the game.  It did not take us long to get there as we are now getting very familiar with the area and roughly knew where we were going.

We spotted Erica when we arrived but knew she was busy with her team, so we found some seat & watched.  To say they were 16/17 year olds (girls I might add) they were amazing, grated I’m not the oracle on all things basketball – Damo was also impressed.  Unfortunately they lost but we all enjoyed our first American High School game.

So it was off back home for tea & bed, who knows what will happen tomorrow.

Charlotte xx

PS - For those who are interested I Have been reliably informed that Calendar News will be showing our story on Tues 8th, Wed 9th, Thurs 10th & Fri 11th Feb!! Yes 4 parts & hopefully I will be able to put it on the website for those who do not live in the Yorkshire area....

Our countdown begins.......

Well last night’s excitement was Jacob has decided to start sleep walking!! Found him in the kitchen at 2am – what’s that all about???

Well after a few tears calm was resorted & we were all asleep as the alarm was set for 7:45am, the boys had a special Skype call to make at about 8am.  The alarm went off and I jumped (not) out of bed and went into the boys room to wake them, just as my phone rang – it was All Saints with bad news the internet was down & a firewall was preventing them using Skype – yes you guess it Ben was going to be call his class.  They were both very disappointed but we were awake so we got up, I managed a few calls home & the boys finished building the Lego they got yesterday  - when all of a sudden  call come through it was All Saint – I honestly though the boys were going to explode they were so excited.  It was the end of school but they all seemed so excited to see Ben, as Ben was to see them.  It was so lovely to see – we will be Skyping them again next week.

Skyping 6J!!!

So we slowly got organised as we didn’t have to be at the hospital until 1pm, we thought anyway.  I just happen to be posting something on Facebook, and James Lee (The International Co-ordinator) messaged to say our appointment was actually 11am, it was 10:20am we were all still in PJ’s & were waiting on Damo to get back from the bakery with breakfast.  Anyway with a rush we got to the hospital with about 10 mins to spare.  As we arrived in Dr Parks office we saw Abby & Brad who would be filming it for the Hospital website piece they are doing (good job they checked the time!!).

About 2 minutes later the Wardleworth’s walked in they too were see Dr Park.  After a quick chat we were called in.  As usual Dr Park breezed in, in his cool calm manner and greeted us all.  He then had a look at Ben & asked him to do a few things he showed off his balancing – He then told us what he need to work on, strength in his thighs, locking his left knee when standing up, not slouching when he sits & lots & lots of walking.  Ben agreed to all of this, he also told Ben he NEEDS to stay active as much as possible as this will also help him gain strength.   He then turn to us and said that:

Ben WILL walk unaided within this year, without a doubt!

We know he had said it before but it was wonderful to hear again, he told Ben he expects him to work hard & do lots of sports and run!!!  He wants us to send videos & reports from physio from home in 6 months but he will keep watch all the bits on Facebook.  We were all so pleased again we Thank Dr Park as Ben did & that was it, he was gone.  I don’t think it has really sunk in yet as Ben has such a long way to go till then – But he will get there I’m sure as so many children have done before him.

So we then left & came home for a while before heading back for PT at 3pm, I have to say Ben was a little more tired than usual I think a combination of late nights and all this hard work he is doing is catching up with him.

Before we knew it it was time to head back – Jacob choose this time to ‘kick off’ so Damo dropped Ben & I off and they went to play in the park for an hour then would come back and pick us up.

Abby & Brad were there to meet us they were finishing off the filming, & told us Dr Dobbs was dropping in to see Ben.  So Ben got straight to it – he was a little giddy, due to a large audience but worked hard especially once Dr Dobbs came in.  I had a lovely chat with him; he was really pleased with how well he was doing & his impressive 4 half hour discharge.  I asked him about why they don’t cast children after the surgery anymore & he said they found this was a better way & the children could get back to PT alot quick.  He watched Ben walk then asked to look at his legs I asked him about the swelling but he just confirmed what I though and said it would settle soon.  Then Abby interviewed him again he reiterated what Dr Park had said that Ben would walk independently before the end of the year.  

Ben managed to stand again without help & balance for over 2 mins, he did a couple of exercises he finds hard crossing over the step to name one, but he tried hard as always - he even tried taking steps & did take a few really good controlled ones, I was so pleased for him as I could see he was really pleased with himself.   

We again thanked him for what he had done for Ben, he said he will be watching his progress & he was gone.  All the staff here are so lovely you really feel that they care what happens to Ben & want him to walk. 

After PT it was getting late so we went off to try & find Ben some new trainers as he now has his new splints sorted after a few hiccups.  But we could not find any so we decided to get something to eat then head home for an early night – which all need.

What a day and only 1 week till we leave to come home!!!!!

Charlotte xx

3 Weeks/1 Week Post Op........

Today we had no reason to rush, not that we really rush anywhere over here.  It took me ages to get motivated today as PT was not till 1pm, the morning just drifted by.  But it was a mad rush to get ready as we left it to the last minute to get lunch sorted for the boys. 

We all went today but as soon as we arrived Damo took Jacob off as he just can’t manage to stay till & Ben finds him a distraction.   

Look one handed!!!

Ben started off really well on the treadmill but soon lost focus & was messing around, he did manage 15 minutes and to be fair it was really good walking.  Next we went into the other room for a little Total Gym again he asked Erica to raise the level & she did.  He did really well.  The next few exercises were new ones the first was walking along a line on the floor & stepping over small cones – Ben again did really well.  Next came a step, Ben had to walk over the step placing on foot on top and then the other on the other side, Ben found this hard but did a few really well.  Erica had promised that if Ben did all his exercises he could dribbled the basketball in the chair (he loves this).  As Erica & I chatted about a few things then Ben was about to stand up with Erica’s help when I said ‘ Stand up without our help & I’ll give you $50’ I was not expecting him to do it, yes try but not actually do it. 

Well he only did it – yes he had to focus and try really hard but he did it, as I was kneeling in front of him, he had his arms around my neck he said ‘move back a little mummy’ then he let go and took 2 steps, I looked at Erica her face said it all, I looked at Ben and yes I cried.  I tell you Ben has such inner strength just when you think he has no more to give he pulls it out of the bag, to say we are proud is an understatement.

Ben walker with his walker all the way out to the waiting room to tell Damo & Jacob, Erica said Ben’s homework was to practice standing from  chair 5 times before meeting Dr Park tomorrow for the final time.

We also checked (by the powers of Facebook) how Evan was doing after his SDR today, by all accounts he was doing great.

 http://www.ilkleygazette.co.uk/archive/2011/01/27/keighley_news+%28keighley_news%29/8814655.Ilkley_and_Silsden_surgery_boys_meet_in_US_hospital/

The afternoon was nothing special a bit of food & some shopping.  I decided to make shepherd’s pie for tea, it took a while to find all the items but we managed and it tasted not bad, if a little salty.

Tomorrow is a special day in quite a few ways – but I will wait till tomorrow’s blog to fill you in. 

Charlotte xx

A Slow Start....

Firstly may I thank you all for reading my ramblings as of yesterday we have had, since being here in America well over 3,000 hits on the blog! Mad...

We have settled quite nicely into a routine now here in America, the boys have a late night ish, and then they sleep till 8:30am which is a bonus.

So it was the usual morning routine ~ We managed to squeeze in a few calls home before PT this morning as we seem to be forgetting about the 6 hour time difference.  I was taking Ben to PT again today as I needed to see Abby to hand over a memory pen. But with one thing and another we missed each other.

Ben was on fine form for his session today, although he did try it on but Erica was having none of it, she sure knows him already.  He managed nearly 18 minuets on the treadmill, which was amazing as he has been finding it really hard after his second surgery.  Next Erica brought in a balance beam!  Ben had to walk (nose over toes!) heel to toe long the beam, this was hard work but he tried really really hard.

A chap from the splints Dept, came to sort out the problems we were having and took them off to fix them.

Next it was the wheelie chair, I did ask myself what on earth but seeing what he was doing made sense.  He had to scoot forwards using his heels this he found hard and needed a lot of help.  As for doing it backwards Ben found it a lot easier & ended up all the way down the hallway. 

The chap brought Ben’s splints back and they seemed fine so all was good & it was time to go.  Time really does fly during these session, Ben pushes himself so hard we do not need to interfere as we know he can push himself, Erica has just got him so sorted she knows what to say to him that we need very little input now.

Back home we were greeted by a very giddy Jacob so a quick lunch and we were off to the City Museum.  The boys had heard from the Wardleworth’s about how exciting it was so they were really looking forward to it.  It did not take long to get there as it was in downtown St Louis about 10 minute drive away.

The building look AMAZING the roof has a school bus hanging off it, can’t get much cooler than that.  The museum is nothing like I had ever seen, Jacob was a little nervous but it was not long till he was sliding down the 10 story slide.  Ben on the other hand found it frustrating, had he been more mobile in his walker I think he would have found it more fun but as he is mainly in his wheelchair now he was getting a little frustrated at times.  But we found a few things he could do & later he managed to crawl through a lot of the cave and had a great time and got so dirty with it.

 Damian's is really a big kid - Fact!!!

  

Could not have done this even if I tried - Fluke shot!!

After 4 hours it was time to go as we were all getting hungry and needed a shower. 

Back home it was  quick shower change and off back to Applebee’s for tea.

It is really lovely to be spending all this time together as a family, I know the reason we are here is for Ben but the fact that we decided to all come together I think has made it all the more special.

I nearly forgot

NEWS FLASH – Jacob has lost his second tooth!!!

I know Ben still has a long way to go to make his dream of walking unaided, but we can now see, after both surgeries and all the help and support from everyone that this is now not a dream but a reality.

Without all your constant help & support this would not have happened.

THANK YOU from the bottom of our hearts.

Charlotte XXX