Saturday, 24 December 2011

Evan's Big Christmas Message - 24th Dec 2011

So, it's Christmas Eve and it's pretty much the same as last year -kids full of nervous excitement, little bit of last minute shopping and to-do list mounting up. Except, it isnt of course, and it's been a roller-coaster of a year but we thought we would let Ev speak for himself in this Christmas blog. (By the way, these are genuinely his real answers - word for word...)




So Evan, how would you describe 2011 - "fantasmagorically brilliant"

and what was the best bit - "learning to walk"

and what are you most looking forward to in 2012 - "the Queen’s Jubilee"

and what any personal targets for you - "my personal target is to get up to standing independently for 20 minutes straight"

and do you think you’ll do that - "yeah, cos I bet I can do anything"

and what do you miss about america - "I miss Erica, Mike and everyone else I met especially Dr Park cos he is MY BIG HERO!!"

and how proud are you of what you have achieved this year. "hmm - over Mars"

and how brilliant have all the people been who have helped you - "I think they have done extendedly good
. they have been helping me over the level that they should be and I am really happy about that"


Earlier this year, you left Aire View - have you got any message for them - "Just want to say that I really really miss you and I will visit any time you want "

and how are you enjoying Hothfield - "I'm enjoying it fine. Miss Ilsley is a really good teacher a if you got her you’d be over the moon too "

and what about all you new helpers and friends "they are fine and they are really good"

And now some guest questions:
I would like to know how many steps you can walk now? "292 steps in one go"
Can you get from sitting on the floor to standing ? "yes, but it's a bit tricky" (and are you going to work on that) - "sure I am, yeah of course"
You are such a brave boy and I hope you enjoy turning on the Christmas lights in Silsden. - "I
enjoyed it all right but I was nervous and then ker-bam i did it !!!!"

Hi Ev, we just wanted to know how you feel about being our local superstar and whether it's a bit weird everyone knowing who you are? "I feel ok about it and yeah, it’s quite weird but interesting." (how about when you are in Silsden and everyone says 'hi') - "I feel ok about that and it’s a bit normal"

Hi Evan :-) We would love to know, what has been the best bit about having SDR for you - "I got to learn to walk"
what have been the best changes "instead of me just thinking like I used to, I just stand up and do it"
oh and Jack wants to know, is total wipeout still your favourite show :-) "yes it is, and Horrible Histories and say hi to Jack for me"
Lots of love Ev, you are doing amazing XXX

Do you have one last thing to say "I’d like to say thank-you to everyone in England and Merry Christmas"





Thursday, 24 November 2011

A unique opportunity - 24th November

First up, sorry it's been so long since the last update.... will do better in future. Promise.

Well... so many people ask "how is Ev doing" and I try to explain the best I can, but it can be difficult to keep it brief and include everything he has done. Also, not everyone is lucky enough to get chance to speak to him.

So, (and yes, I know this gets me out of doing a proper blog for a little while) - given that we are just 3 days away from Evan switching on Silsden's Christmas Lights (see Silsden.net for details) - I thought we could give people the opportunity to ask Evan questions directly. (You dont get this when Justin Bieber does light switch on....).

The questions can be on any topic - and I will also get him to do a "guest blog" at the same time. If you want to ask something, post the question as a comment here, or on the Facebook site or even tweet me.




Sunday, 9 October 2011

Legacy - Sunday 9th October

I'm usually pretty good with dates, and have been thinking about events gone by as anniversaries come along - so I was genuinely surprised last night when a friend asked if it was the anniversary of the ball this weekend. Indeed, it is... I hadn't forgotten, as such, more that we hadn't thought it.

There is so much detail that still remains fresh - many people forget that the day actually began with "Katy's Big Coffee Morning". I remember the weather was pretty the same as today to start with (pretty awful) and that the sheer amount of people there was totally overwhelming. I also remember that, as I sat counting up various big piles of cash, that we had a visit from a guy who had done a fundraising bike ride with some friends and they "had some left over" and wanted to donate it. That in itself would have made it an awesome day - but this was, for many other reasons as well, the most awesome of days. I then remember having to track down a prize for the raffle which meant that I got a strangely memorable trip to work on a Saturday. Memorable in as much that it gave me half-an-hour to reflect on the day so far and what was to come. I still kind of miss the rush of adrenalin that came with all of the events.

I could do a whole blog on memories from the ball - there were so many things that happened then that still make us smile. Not least sitting with new friends when the auction was raining money - thinking crikey, what is happening here. However, and this is strange to say when talking about a fundraising event that defied our wildest targets (probably tripling or even quadrupling our original expectation...), but it wasn't about the money. It confirmed that we should do this, gave us hope that we would, and confidence that we could.

So, how did we forget about it being a year since. How was this day amongst days not a cause for celebration, a day marked on the calendar ?

Well,  it's been a year... and we have fit a lot into it, but just when you think you could with a rest, and that the world might just stop spinning at 100 miles-hour, more stuff comes along - and this week, something clicked. As well as Evan is doing - and, as predicted by Dr Park - he is indeed walking independently, it was a little stacatto. Left foot forward, right foot brought alongside, pause, left foot forward, right foot brought alongside, repeat.... However, his news on return from school on Tuesday was that he had walked 198 steps as part of his PT, and that these were more left foot forward, right foot brought just ahead, left foot ahead of that, right foot ahead of that, repeat. Proper steps, I guess....  I did ask why he had only done 198 (that was great but 200 was a nice round number) and Ev simply explained; "well, I had reached my desk". Why walk more than you need to... We were still recovering from this when, on Wednesday, we got the news that he had managed to do 292 steps. (I didn't ask where the other 8 were...). Today, we went swimming and he even stood up in the "little pool" and walked a few steps there.

The Ball will always be a massive part of Evan's Big Journey, but that was the past and, with massive thanks to that, Evan is writing his own future now.

Thursday, 29 September 2011

A week in the life of.... Thursday 29th Sept

Friday 23rd
Got up, got out of bed....
I had a day off to sort out some bits&bobs (tm) and so started with the school run. After a weird couple of months, things are back in the fullest of swings - but a day off meant that I was free, for once, to attend Ev's PT after school. Grandma looked after Maya&Sam while Loup and I took Ev. I'm not sure if it was that he had both of us there, or that he was at the end of a really busy couple of weeks, but he seemed a little bit lacklustre. It must be really difficult to get up for each session but he pulled it round to "ok". It's a little bit frustrating sometimes as we have so little quality time at PT, but he's a little boy and it's a difficult balancing act.

Saturday 24th
It was Matthew's, Ev's best-friend, birthday party. The serendipity of a PT session in a children's party is something I suspect only an SDR parent will appreciate.

Sunday 25th
Today was one of Ev's beloved "pyjama days". They do what they say on the tin, and - true to our word - he gets a "day off".

Monday 26th.
New week arrives like fresh snow, and we attack it the best we can. Now that Sam is at "big school" and Loup is working full-time, it's all systems go, all the time. We have even managed to stay in the groove of getting the stuff ready the night before. We are supposed to fit in Ev's PT which takes about 30 minutes but somedays we have to reduce down to a series of the main stretches. As the kids have developed a taste for sleeping-in (well, it's all relative) we have about an hour+half to get the all fed, washed, dressed, do the PT, then get ourselves sorted. After school, Maya goes to Grandma's house for tea but Loup still has to take Sam and Ev to PT. Sam just sees this as a play-centre, and who can blame him, but it does distract from PT slightly. In the meantime, I have l"egged it" home from work and started on tea, quick bath, stories, pick Maya up from shell-club and then we finally get to sit down together for a bite to eat, gone 9... Get the kids clothes together and then off to bed.

Tuesday 26th
Morning routine is pretty much the same as the day before - frustrated again that dont get enough time to do the PT. However, Ev has a PT visit at school and he does swimming - so we know it will be a tiring day for him. After school, Loup picks the kids up, feeds them and then takes them to Maya's swimming class with her as I'm going to a "maths thing" at school - so we all meet up just after 8:15. In amongst all of the getting ready for bed, Ev tells me his news. HE HAS DONE 100+ STEPS WITH PT AT SCHOOL and he won himself 10 house points into the bargain. A real gem in amongst all of the to-ing and fro-ing.

Wednesday 27th
Morning routine is pretty much the same as the day before. Ev has PT after school and, after work, I drive and meet up with Loup in a local car park where we transfer Maya and then I take her to dancing while Loup takes the boys home and starts on tea. Sounds like Sam had "fun" at PT... When we get home I have even more news from Ev. However, I dont really find out about this until he is in bed. HE HAS DONE ONE HUNDRED AND TWENTY FIVE INDEPENDENT STEPS - WITH A 180 DEGREE TURN!!!. Great news - after the session I saw a week earlier, it was amazing.

Thursday 28th
Morning routine is pretty much the same as the day before. However, we get a following wind and I manage to sneak in a proper set of stretches. It feels really good to be able to fit this in - it's proving to be a difficult balancing act - putting in the time he needs, plus getting on with life. A hectic 7 days, probably no different to most households around the land, we even got a bit of sun and both Loup and I managed to squeeze in a night out. Wonder what next week will bring....

Thursday, 8 September 2011

Homework - Wednesday 8th September

Well, back to it.....

And so, the wide-eyed newbies headed for school, and that was just myself and Loup.... Even a massive downpour didn't curb any enthusiasm although it did make it somewhat damper ! Sam went to Aireview (first day at "big school"), Maya was in Year 5 and Ev was moving up to Hothfield. So all new, all nervous, and we were even on time... Along with a new school, a new building, new routine, came new faces - in the form of new Head Teacher, new Teacher and new Teaching Assistants.... Very pleased to report that so far we are all coping and Ev has already proved to be a charmer.

More on these new adventures later, but now a quick update of the school holiday's activity. It's a very difficult balancing act - you want to let the kids have the rest and fun that they deserve but there are still stretches, exercises, walking practice and PT to fit in. I think we did ok in the end. We even managed to get a few days away. We had a few days in Tenby, Wales and absolutely loved the beach and St Catherine's Island - followed by a couple of days at Legoland and then some "chillaxing" (not my word).


In terms of actual progress, here are a couple of videos of Evan doing some independent walking. In the first one, set at the clinic, he does a great spot of "correcting" - which is stopping himself from falling. In the second, he is shown walking to the car. We have spent time trying to get him to walk "in the wild" - and this is really coming on. We just need to do lots more of it. Lots, lots more...





...and with that, the 6 weeks were done. Well, back to it...


Wednesday, 27 July 2011

1 year; 6 months; 6 weeks and 1 day


One year ago today (27th July) we got an email from St Louis Children's hospital which told us that Evan was a suitable candidate for the Selective Dhorsal Rhizotomy surgery. It's safe to say that things havent been the same since....

Six months after that, and therefore just six months ago (28th January), following six months of fund-raising, Evan had the surgery. That was just the beginning.... below are a couple of "before" videos.






...and by way of an update, here are a few "after" videos. Hopefully it shows how much progress he has made in just six months since.










So, what next ?

Well - it's the start of the six weeks holidays, so we will have chance to "get our hands on" Ev and, in amongst doing all of the usual "kids stuff", we have a few challenges for him. Watch this space and one day soon you will see him walking independently. One day...






Sunday, 17 July 2011

A real team effort - Sunday 17th July

It's a big week coming up.

Evan has only 5 days left at Aire View. A school he has been at for 4 years (nursery, reception, y1 & y2) but which has been much more than a school. In many respects, Evan has developed as much there as he has at home. Many of his achievements and challenges have been experienced more there than at home. This has been his first experience of "real life" and everyone he has met along the way has helped him in some way or another. From Headmistress, teachers, teaching assistants, dinner ladies, caretaker to the other pupils, everyone has been brilliant. However, while it would't be fair to "name names" there is one person Evan wants to give special mention to ~ the wonderful Mrs Smith. I think it will be sad for them both on Friday, but we'll definitely be keeping in touch. She wont be rid of him (or us) that easy ! In fact, Sam starts his reception year in September, so we'll be there twice a day for the next 3 years !

When we started fundraising, the school really helped out with a number of events, and pupils themselves were inspired to help with their own events - but the most amazing thing was when we picked Ev up from school on his last day before we went to St Louis. The amount of "stuff" that he came out with was amazing; cards, banners, balloons, toys, teddies, photos and loads & loads of well-wishes. Then again, when we got back, he had so many people come up to him and ask how he had got on, and how he was.

We'll never forget the part that Aire View has played in Evan's Big Journey and we are truly grateful !

THANKS!!!

Aire View Website


Thursday, 7 July 2011

This is why ! - Thursday 7th July

Quite a busy week since the last blog. On Saturday, Loup was able to take Ev "proper shoe shopping" - for the first time and he was able to get shoes that, although there were some considerations around ankle support, were just the same as ones that his schoolmates might wear. They didn't have to be two sizes too big to accommodate his splints.

He took special liking to a rather cool pair, if he does say so himself. It's something that hundreds of families do each week. Something so simple, but so great to be able to do it. (apart from the "they cost HOW much ?!" moment, of course). Hopefully, this is just one of the things that make Evan's Big Journey so worth while.




However, just like buses - once you get one "that can go on the blog" moment, another often follows on immediately (see video below). There isn't much that I can, or should add. Simply - to all of the wonderful people who helped support us and raise the cash to get us there, to all of the wonderful people who helped while we were in STL and also to all of the wonderful people who have supported us since - this is why we did it......

Thursday, 30 June 2011

Different view - June 30th

Given my absence from work at the moment, but while still having the opportunity to get out and about as much as I can - which includes helping out with the school runs - I have been able to see more of Evan in his "real habitat", and it has been really enlightening. As a working parent, it is easy, if indeed essential, to get up, get ready, get delivered, get to work - followed by get home, get fed, get bathed, get to bed (then, relax....). So sometimes, you don't get chance to consider what goes on in the periods that you aren't there.

Not only has he had us pulling and stretching him before he even gets ready for school, and then again afterwards, as well as PT more days than not - his day is so full of energy-sapping work. "Work" in the sense of the extra effort that goes into getting into and around school. Up and down the steps with both school friends and staff, as well as in and out of classrooms with his frame. On a couple of occasions, when I have gone into school with him - and not having had to dash off - he has needed the toilet, so I have taken him. It's only a few yards, through a couple of doors and through the hall to the disabled toilet. However, you get an idea of the amount of effort needed to manoeuvre his frame over even just a small distance. No wonder his upper body strength is so good.

From a distance, through the school gates for instance, he looks so small - especially with the shoes which are two sizes too big (to accommodate his splints), but the one thing that you notice other than that is that he always has company. I suppose you could excuse the other children to be off doing something else more interesting, playing tig, climbing something, or just - as it would seem, and as I can vaguely remember - running from nowhere to somewhere else. As fast you can. That isn't the case though - he always seems to have company - and although he has some best-friends - there are always new ones around as well. Children I haven't seen before, but who are obviously keen to spend time with him. He seems so happy, and it's really good to be able to see that - sometimes, with all of the other things to consider, it's easy to forget that this is probably the most important thing which he needs.

In terms of recent progress, it's slow but very continued and steady progress. We will do our best to get some more video of independent steps but he seems to get very camera aware and gets giddy, losing control, so we haven't got any recently.

However, we are really pleased that his PT thinks he can move from his current splints (which themselves are small in comparison to the "paraphernalia" that he was wearing back in January) to his "polly-wogs" - which are basically no bigger than insoles. This means that he can hopefully get some more appropriately sized shoes (which may, or may not, flash - like his "Sketchers") but might also mean that he loses a little confidence while he builds up - but this is progress, even if it might not feel like it for a little while.

So, not too much to report in terms of "things that have happened", but lots of progress...

Sunday, 12 June 2011

Back on track - Sunday 12th June

As you may know, Evan's Big Journey took a slight detour over the last couple of weeks. It would be over-indulgent to go into too much detail, but remiss to not mention it. Basically, I had an unscheduled stay in hospital due to a bout of sepsis and associated other problems, but things are slowly getting back to normal.

Therefore, almost as ever, it fell on Loup's slim but broad shoulders to look after the kids and the house, keep an eye on me, and still do the work which Ev needs. Inevitably, there had to be a slight reduction in some of the activity that we do on a daily basis (I find it amazing that Loup managed to do anything at all...) and, additionally, Ev's physio advised that an increasingly shattered looking Ev should have a week off during half-term.

Unlike the saying, a rest seems to have been as good as a change - and he has certainly improved as a result of some time off. I think his body just needed a little time to catch up. Plus, I think he has grown a little, which maybe needed time to settle in.

Anyway, rather than try and summarise the last couple of weeks (as if I would know where to begin....) it's probably easier to say where Evan is at the moment and then just chuck in a video at the end. He is beginning to walk independently and can now manage more than 50 steps unaided. Well, when we say "unaided" we mean without any of his walking-aids and without him holding onto us. However, he does feel quite nervous and needs us to be in close proximity - very close proximity (inches away !). Evan being Evan, he likes to have a target to beat each time. He has also now set himself the target of getting from the bathroom to the bedroom on his own. Which he has managed to negotiate a couple of times and when he does, the smile on his face is priceless.

Unfortunately, the extra freedom comes at a price and as we try to withdraw more, and as he tries to do more independently, he has taken a couple of tumbles. However, it doesn't deter him - nothing much does.

Hopefully, things will continue to return to normal so we can provide more updates and, with Ev's rate of progress, there will be even more good news to report.

And, without further a do - here is the promised video:

Wednesday, 11 May 2011

Time - Wed 11th May

“The only reason for time is so that everything doesn't happen at once.” - Albert Einstein

The lack of blog recently is due to a number of reasons. One is that we have been doing nothing, having some downtime, then catching up from doing nothing. Another is that there hasn't been a massive amount to report. Although that's how it seemed. Progress has been slow - and some times it felt like not jumping forward was going backwards, but it isnt. It really isnt. In fact, not doing the blog for a couple of weeks gives us chance to look back and see how much happens in a short period of time.

On Easter Sunday, Ev had his 7th birthday party - nearly 60 kids turned up for a "pyjama party" - and while it was great to see everyone having a great time - superbly led, as ever, by "The Silly Brothers"  - it was especially good to be reunited with some friends from STL. The Foxes from Manchester and the Smithsons from Ilkley. Holly, Lucy and Ben all being SDR kids as well.



Since the last blog, which is only actually two and a half weeks ago, we have moved Evan from his big splints to his little splints. The difference is materially tiny - just a few inches of plastic, but the impact is massive. Ev has had this physical support since he could "walk" (aided by his frame, of course) and without it he clearly feels exposed and very nervous. This sometimes manifested itself in a slight reluctance on his part and therefore frustration for us - you only need a little step backwards or even a slowdown of pace to see a return of all those nagging worries. "Have we done the right thing". "It's so much to put a little kid through". "What does the future hold". However, you wont be surprised to hear that he is overcoming this. How couldn't he....

It will take time though. The next steps are to build up the strength that he needs and to build up the techniques his he requires. His PT team are very pleased with him and the progress he is making. Just takes a little bit of time.

Finally, over the second long weekend, when thousands flocked to London, or the sofa, or a bar to celebrate the Royal Wedding we headed over to my parent's caravan on the East Coast for a good old fashioned Bank Holiday weekend at the Seaside.

The brilliant weather helped, but it was so good to get out as a family. The highlight was probably down at the beach at Scarborough, where the conditions were fantastic and Evan really got into the spirit of things. In and out of the surf (yes, the surf!) along with Maya and Sam - we'd like to think that next time he'll be running in and out of the surf. Then, it was back home and then back to work, school and of course more PT.

The next blog will be sooner - I promise - and we will try and include some decent progress videos and photos. 'til next time....


Friday, 22 April 2011

A Good Friday - Friday 22nd April

Apologies for the lack of blog last week - as it was Ev's birthday last week there was only one thing the blog could be about ~ reflecting on Day 1 (2004) ~ but it was a difficult one, so it's written and filed away, but not published. Maybe one day...

So, that gives us a couple of weeks to catch up on. A couple of days after the last blog, Ev was a "page boy" in the school's version of the Royal Wedding - and walked "down the aisle" - he has a walking stick at school that he can use to balance him on one side, while holding hands with someone else on the other. I only managed to see a video clip, as I was at work (no bank holiday for this version....) but he looked really steady. Many people have since commented how different he looks. Which is partly one of the "problems" that we have - things are happening steadily but gradually (even though it is only 7 weeks today since we got back) and sometimes it is difficult to see the exact scale of progress. So we sometimes need others to tell us how things look to have improved.

Then school broke up for Easter and we have been trying to balance the relaxation that he needs with keeping up with his exercises, and there is still a lot of flying between appointments - which we are doing our best to keep disruption to a minimum but can be "fun" to manage on occasion. Especially when we are triple-booked - so thanks to the temporary baby-sitters who keep coming to our assistance.

Today was actually the first day in a while which we have been able to do something all together and we took a little walk "down the lane"




We are lucky enough to be in the middle of some wonderful countryside and we haven't taken the time enough recently to wander through it. In parts we got Ev out of his chair and he walked, holding our hands, for a good few hundred yards. Every time we said that he could take a rest he wanted to keep going and going. A little slither of his spirit shows through at times like that, but it's that which makes us very proud and hopeful that he will drive himself forward in the weeks, months and years to come. It even seemed easier to get Ev out of his chair and let him look over a gate and into a meadow. It's a bit difficult to explain, but the operation, in fact the whole experience, has opened our horizons as well as Evan's.

So, all Good !

Tuesday, 12 April 2011

Top of a big hill - Tuesday 12th April

Each year, Maya's school organise walks up each of the 3peaks-  individually, and then collectively. So, at about 10:45 on Saturday I found myself towards the top of Phen-Y-Ghent, ascending the steep side. The last time I did this, it was as part of "Dynamo Joe's" 3 peaks walk. Which, personally, was one of the highlights of the fundraising - equal in both challenge and reward. I'll admit that i'm not a great one for heights (in fact, im pretty terrible...) but I did it. Last time I was able to just chant "do it for Evan..." over and over again to get me through it, but that obviously didn't apply this time so I had to settle for not being embarrassed by my 8year old little girl.

To get through it, I just concentrated on the next (steep) step - not worrying about what was below, and not thinking about what lay ahead. Which is pretty much what we have had to do over the last week or so. Ev has been very tired (not surprising - he really hasn't had a break since Christmas holidays, and has been through so much) and had struggled for a little bit of motivation, and a couple of PT sessions had been hard work. Sometimes he has looked grey, even transparent in a way.

However, I'm pleased to report that he has picked himself up and last Friday's PT session was a good one and he now has a new "party trick". From being sat on a stool, he can do a "sit-to-stand" without any support, can then balance for 10 seconds, then slowly sit himself back down. Which is awesome, and he still gets that twinkle in his eye when he knows that he is doing something amazing.

He breaks up for Easter on Thursday and we hope he can use the time to re-charge his batteries, as well as have some good days out. During the holidays he will be having his birthday (this Saturday) and his party the 8 days later - where we hope to catch up with some friends that we haven't seen since STL. Will be great to catch up with them all. We are also hoping that he can go from his "double splint" to the "single" version - but a lot of this depends on Ev himself. He has the strength now, but it is the psychological aspect - he has had splints for so many years now and he is clearly nervous about losing this support through the day.

We don't doubt he will be fine though - he's already climbed bigger hills than I ever could...

Saturday, 2 April 2011

Mothers Day - Sunday 3rd April

If you're reading this then it's fair to assume that (a) you helped with the fundraising and/or (b) you know Evan and/or (c) you know of Evan. So we thought it only fair to let you know of something which we are proud of being able to do, although at the same time not really being something which we wanted to shout about.

When we started fundraising back in July last year, we always said that if we were lucky enough to make more than we needed then we would help other families in similar situations. Of course, you will know that we were so incredibly lucky.

You might think that giving money away is pretty easy. Strangely, it isn't.

For every person, family or cause that you are able to help, there are 10, no 20, no probably 50, even more, that you cannot help. So in many respects it is actually a difficult thing to do as it draws attention to the vast amount of good causes out there - most of which aren't getting the funding and support that they genuinely need. We are so, so, sorry for the ones that we aren't able to help. However, what we would like to say, and what we would like to think, is that we have been able to pass on a little bit of the luck that we have had. Not enough, but hopefully a little bit closer to something like enough. So, on behalf of the causes that we have chosen, we would like to say thank-you.

We, and now they, couldn't have done this without you.

As for Evan, well - he goes from strength to strength. When he first stepped on the treadmill in STL, with Erica (from America) and (Mad) Mike he was doing a couple of minutes at 0.2 mph. A month later, just before we left, he was doing about 15/16 minutes at 0.6mph. On Wednesday this week, with Steve (no nickname yet) he did 21 minutes at 1.2mph.

Enough to make any Mother's day !

Sunday, 27 March 2011

Before and After - Sunday 27th March

It was 4 weeks on Friday since we got back and I'm not sure whether it has flown by, or feels like a lifetime ago. A bit of both really.

We are trying our best to make weekends a combination of rest for Ev and spending quality time together. This is definitely required after the week's activity which, on top of the normal schedule of kid's clubs, school runs, nursery pick-ups and coming and going to work, now includes extra trips to PT. This week it was Monday, Wednesday and Friday - and unfortunately most of the "to-ing and fro-ing" falls upon Loup's shoulders.

Not that we are complaining, we knew it would be like this and we are more than happy to have signed up for it ~ made much easier by Ev's attitude and all of the help and support that we continue to receive. However, we are constantly blown away by Ev's drive and determination. Take this evening for example - having done a bit on the treadmill (even though we were happy for him to take it easy) he wanted to do some more. In total he has done about 24 minutes today on the treadmill !



Yesterday we had a visit from Robin Carter who is also on his own journey towards St Louis. We did our best to offer some advice and support, and will hopefully be able to help out as much as we can - however, as we talked it was really interesting to note how much progress Evan has made since his return. One great example of this is that he is nearly in a position to move down from his initial set of splints to the newer, smaller, set. Which he can do somewhere around 6-8 weeks after his second op - next week is week 7, and it depends on how strong he is getting. This will be a massive change, which you can see from the photo below.



The piece of medical equipment on the left is the twister brace which he wore all day, every day, and which rotated his left foot outwards so that it fought against the muscle rotation and brought things back in line. The other pieces of equipment, almost tiny by comparison, are the "new splints" which he will soon move into. Even without all of the "he'll be walking soon" stuff, this makes such a difference to him, and when you explain to someone what he used to have to put up with, makes you feel quite guilty that we didn't do this sooner.

Another example is that we were only recently told that "pre-Op" Ev would have been in constant pain ~ as his body wouldn't do what he was telling his brain to tell it to do, this would cause him some pain. Perhaps like toothache or a headache - but just think what it's like when you haven't been feeling well and then you recover. As a result, he should be thinking "clearer" - as he can actually concentrate fully on things. Quite heartbreaking in many ways, but proof that the "after" is way better than the "before"....

Thursday, 17 March 2011

Sometimes this writes itself.... Thursday 17th March

When we were in St Louis it was relatively easy to know what to write in the blog. Even though it was written daily there was something new to report each time. Since we have got back, things have levelled out and we are on a steady, but slow, slope and sometimes it feels like there is nothing "new" to report.

Yes, the treadmill is coming tomorrow - which will give us chance to increase Evan's stamina and get those miles under his belt.

...and yes, Ev continues to do really well at school and we are really proud with him - he just doesn't seem to have dipped since his journey. However, I mentioned that before.

...and he is also doing really well with his PT sessions and continues to improve each day. Again, not really "news"...

So, I was contemplating a fairly general update with a couple of photos of him doing his standing unaided, which he is getting better and better at. Then I came home tonight and was greeted by Loup and the kids, giddy as kippers. This is why....


No words can describe it.

Saturday, 12 March 2011

The Future - Saturday 12th March

I think it's safe to say we are pretty much settled back in now - Evan continues to amaze at school as well as with his PT. At school, it seems as if he has never been away, which is really good seeing as he has missed the best part of a half-term - was obviously something we were worried about. However, he has also been doing in excess of 2 hours physical work each day, whether it be the stretches that we have to do, the extra walking that we are trying to get him to do or the PT sessions that he has. He also continues to stand for longer and longer ~ his current record is 4 minutes 32 seconds point 4 (he hastens to add). Ev is very proud of this.

That said, Ev is only human and so we make sure he has a full day chilling out (or a "pyjama day" to him). Which this week is today. He is currently sat watching the Australian version of Total Wipeout, which I spotted was on Watch last night. A bit more "strewth" than "ooph", but essentially exactly the same.

He wasnt entirely happy that I interrupted his pyjama day for us to pop out. We need to get a treadmill at home, so that he can get those miles under his belt. I sweetened the deal with a trip to McD's on the way, and im glad we did sort it out. We managed to get a good quality refurbed one for a little bit less than we expected to pay, and we might even get it delivered next week. It was also the first time we had been out together since STL, which was really good. I've made sure that I've spent lots of time with Maya and Sam over the last couple of weeks, so it was nice to have some time with my "big journey buddy".

In contrast to STL, where there was seemingly massive progress on a daily (if not hourly) basis, it has been steadier since we got back. Clearly, this was always going to be the case - but it's good to have an "event" to look forward to - and the arrival of the treadmill in the next week or so will definitely be that. Not least because it means we will have to sort out the back room so we have somewhere to put it. Which has meant collecting all of the various Evan's Big Journey "stuff" together to put in the loft. For "The Simpson" fans, I kind of feel like Homer Simpson with a big box of Be Sharps stuff. 

I guess in years to come, we will dig it all out from time-to-time and look through it, and we have enough wristbands left to last us for the rest of our lives (not to mention a couple of boxful of Christmas cards - which you are all getting next year...). It could have been easy to dwell on what has happened over the last 9 months, but we owe it to everyone who has helped out, we owe it to ourselves and most of all we owe it to Evan to make the most of the future. The future starts now....

Friday, 4 March 2011

A different kind of normal - Friday 4th March

It's been a week since we got back - in some respects a normal week, but in other respects a very different week.

In the last post I talked about our "first steps" back in England - and they were actually captured on camera....


I think we have done pretty well in avoiding jetlag - although Ev did sleep from 6pm Fri to midday on Sat - and only once was I wide awake at 2am in the morning (Monday). On Saturday we had a number of visitors to see Ev and on Sunday Ev's teacher, Mrs Oswald, came to see him. Then, as usually happens, it was Monday morning. No avoiding it. We were able to take Ev into school early and get him sorted out, which helped a little bit - as nice as it would have been to see people, it might have been a bit much for him. Although, perhaps not. Every challenge that we have thrown at him, has been batted back over our heads (maybe not the best week to use a cricket analogy...). In the end, he has done a full week (we thought he might need to be phased back in) without seeming too tired and everyone at school is really pleased with him.

On Monday we also met with Ev's PTs; Emily and Steve. They were both really impressed with his progress and we know he is in good hands for this next part of the journey.

As for Ev - he is still extending his "record bests" - when we came back from St Louis he could stand, balanced and unaided, for about 2 - 3 seconds. Which was better than the 0.01 seconds he could do before the op. He needs to do this, as it's a building block to being able to walk, and he can now do 90 seconds - yes, NINETY seconds. You can see him moving and wiggling, adjusting his hips and upper body to remain standing and always, always with a big grin on his face.



Other than that we have both been settling back in - although we both miss STL a little bit. It's definitely a case of mixed feelings - we are SO glad to be back home, but you kind of get used to the routine and the safety and we had this "guys on tour" thing going - which I suspect was actually probably more like Morecambe & Wise (sharing a double bed in our PJs) than Jagger & Richards. As much as it was difficult to be separated from Loup, Maya and Sam, it was an opportunity that most people wont get - so much one-to-one time with a child, free from having to do the housework and going to work or school. We had fun.

So, back to normal, but not quite. It's a different kind of normal.

Friday, 25 February 2011

Homeward bound - (and a bit of news....) Days 34/35 - Th 24/Fr 25 Feb

After a couple of weeks of relatively leisurely starts, our last day in STL began in a slight panic. Having started packing the previous night I realised that I might have to jettison most of my clothes to get everything in the two suitcases. So, I did the (now, I guess almost customary) dash to get an extra bag - and along with it, one final shuttle bus run with Carlton. In the end, we were packed and ready in plenty of time so sat in the lobby and said final goodbyes to a few passing friends.

Getting onto the Manchester bound flight was rather interesting, given a couple of delays but we made it by the skin of our teeth. The flight was fine, and Ev even managed a small nap from 2130 - 0030 (STL time). He woke up with 26 minutes of the flight to go, and when he saw this info on the in-flight screens he was so giddy. Just kept smiling his big (slightly gappy) smile, wanting hugs and giving high-5s. We had to wait to until everyone had got off, so he was a bit impatient, but we were whisked through passport control and, as our bags were last on in Chicago, they were first off so we were done really quickly. [PS - Massive thanks to my other Big Journey Buddies - Wayne & Char, we certainly couldn't have got home without them]

The last minute of Evan's Big Journey.

As we got to the the departure area, I got Ev out of his wheelchair and we walked hand-in-hand to meet our family. Oh, yes - I didnt mention that, did I ....?

Evan's PT homework had included walking holding both "pinkies" and last Sunday we tried a bit of single handed balancing. And then a couple of steps. Over the week he got a little better, and is starting to get more balanced and can now do about 20/30 steps (before he starts laughing and loses his balance).

It is still a LONG, LONG, LONG way to go - but we are so proud. Im sure you will understand that this was some news that we had to save for Loup to see in person. She is Ev's Mum and made a massive sacrifice over the last couple of weeks. However, when he took those few steps towards her, I think it was worth it.

Thursday, 24 February 2011

Last Full Day - Day 33 - Wednesday 23rd February

After a late night at the hockey, we were both a little tired - so an early start for a 10am PT wasnt the perfect choice but it was ok. we managed to have a quick skype to the kids (at Grandma's) - i'll own up to it being my birthday today. Which is a little difficult in some respects (i'm not with my family), strange in others (i'm in STL with Ev), and great in parts (my friends Wayne & Char - are great company and came all this way!).

So, after a quick breakfast we took the shuttle to children's for our last PT. I'm not really very good at saying goodbye so wasnt really looking forward to it. However, it was a little easier that Mike and Erica werent around. We had said our goodbyes to them on Monday and Tuesday, respectively, and it was our first and only session with Blair. So we left the building - and it's obvious (now?) that it is the people, not the buildings which make a community. We have had a small community here, and so with a goodbye to John on the front desk (the SDR families will know who he is) we were done. A little sad, and if truth be told, a little scared - but knowing that we are in better shape than we arrived. A little homesickness and missing family and friends will quicky wash away, but the impact of Evan's Big Journey will last forever.

Another quick skype to home (apols to Loup - the arrival of our guests and the chance to do things has meant less skype time....) and we then headed to the Arch. Evan hadnt been before, as was the case for Wayne & Char so we took a ride to the top and ticked off another "done that" item. Essential for any visitor to STL.

Right, what to do now ..... ? Strangely, and almost as if we had planned it, it was 1945 at home (Man Utd game kick off time) and we needed somewhere warm to hide and have something to eat. So we popped back to Tigin.

We are now back to the hotel, and it's 6pm here. We are going to meet up with the Foxes and say hi, bye and good-luck. The girls have their second op in the morning so we wont see them as they have a dawn start, but im sure we will see them (and quite possibly hear them coming first....;) in the future. No, we will make sure of it. Ev's birthday party in April could well be a mini northern SDR reunion party !

I suspect tonight will be a relatively early one as Ev is flagging a bit, but you never know.... I might get one final birthday pint (although i'm going to get a re-run on Saturday!)

So, this is the last blog that im going to write on America soil. It started off as an alternative to writing postcards and we are amazed, in fact overwhelmed by how many people read it. (more than 10,000 blog reads in the last month !!!). As each person comments on it, or shares it, it makes us smile and realise that people are on this journey with us. I will carry on, in the future with further updates on Evan's progress, although don't worry - not daily ! and I guess there is only one word to sum up the last 5 weeks.....


FANTASMAGORICAL !!!



Thanks!
The Whitton Family!

Wednesday, 23 February 2011

Running out of days - Day 32 - Tuesday 22nd February

I suppose it is always the case when you are away from home - you cant wait to get back, but you keep finding new things to do, as you find out more about your new, temporary, home.

Today, was another in a series of "last...." days. We had our last PT with Erica who, along with Mike, have been the two PTs we have mainly dealt with (plus "hi!" to Gosia, Nicole, Mackenzie and Sarah). Every time I think of our time with Erica I see three things; firstly - the day after his second op - excruciating, but Erica said it was always like this (worse, sometimes...) and it was worth it in the long run - so, so true !, secondly - her "chucking" him on the treadmill on his first PT after discharge when we had been treating him like a china-doll and finally the constant reverberations of "good job buddy!" and the smile that met any new "trick" he has developed. Today and yesterday, we walked out of the PT suite on floor 4, knowing that we perhaps wouldnt see these guys again in a professional capacity - but they have truly helped changed Evan's life. No less than that !

So, we had a slightly flat lunch, but were cheered up by a skype home. However, I so need to give out real, rather than virtual hugs to Loup, Maya and Sam. I'm fed up of kissing goodbye to the webcam.

We spent the rest of the day with Wayne and Charlotte - firstly watching a bit of EPL (English Premier League, obviously) and then moved onto the Scottrade stadium to watch the St Louis Blues. Bit bigger than the Billikens, yet equally bonkers.



Unfortunately, they lost - but it didnt really matter too much (aside from the score, 3-4, we didnt really understand much of what was going on - they may or may not have been the better team....).

Tomorrow is our last full day, last session of PT (with newbie to us, Blair), and then hopefully visit the Arch, and a nice night finish up. Oh, yes, and I guess i'd better start packing....

Tuesday, 22 February 2011

Starting the goodbyes - Day 31 - Mon 21st Feb

We need to go home. We both do.

However, as clear as this is, it's actually sad to start the leaving process. I guess you become a little "institutionalised" with the routine, the surroundings and the safety of being here.

First up, we had our last PT session with "Mad Mike" - who is as brilliant as he is bonkers, and who squeezed every last drop out of today's PT. He was really pleased with Evan's progress, although he is still a little sore on his left side - particularly the hamstring. Once he is over this, he will start to feel more comfortable, take longer and steadier steps, stand firmer, and really be able to make the progress he is due.

The highlight of the session was an AWESOME Wipeout zone which Mike built and, yet again, Ev beat me...

So, we said goodbye to Mike (hopefully until the next SDR party) but walked a little slower out of floor 4.

Quick skype to back home from the canteen and then onto our second appointment of the day with Dr Park. Post-op review. It only lasted 15 minutes but he was so pleased with him. Definitely stands by his original goal that Ev will be walking unaided within the year. He has a tough year of exercises, stretches, and developments in front of him, and we, whether it be as parents, family or  friends, need to be there to support him. However, I just know that whatever we invest in Ev will be returned with interest. Dr Park is a man of few words, but it is clear that we have a great responsibility going forward - but how can we not take that on when we have come so far. Dr Park has "simply" given Ev the tools, and he can now go on from here, using those tools.

Once we had done the hospital stuff we met up with Wayne and Charlotte for lunch at The Cheesecake Factory (nice surroundings, good food, reasonable prices) before we headed back to the hotel where they played together for a couple of hours. We have been really lucky in that we have had Ben, Jacob, Amelia, Annabelle, Jack, Holly and Lucy to spend time with while we were here but the obvious bond between Ev and Charlotte is clear to see. They just get on so well, and I cant say how privileged we are that they came to visit us, and accompany us home.

So, just a couple of days left. Tomorrow we have our last PT with Erica (from America) and a couple of other things planned. As I said, Im not great at leaving places, and saying goodbye, but we need to go home. We both do.

Monday, 21 February 2011

Evan Whitton's Day Off (The Sequel) - Day 30 - Sun Feb 20th

Day 30.

4 sleeps. 

Despite a busy time yesterday, the arrival of another sunny day and our last "free day" in St Louis, especially with our friends from the UK, meant that we simply had to take advantage. However, Ev had some PT homework to do first. He walked to breakfast in his walker, and then afterwards we went up to R301 to wish goodbye to Jack, Melissa and Anthony. Ev walked all the way. We met a scene which we will create ourselves in a couple of days time - a family closing down and heading for home. To be reunited with the ones we left at home. We wished them well, and i'm sure we will meet up at the next SDR party. Another set of friends which we have made. We wish them well on their own big journey - both over the next day or so, but in the future as well. 

After finishing off some good PT - the rest yesterday had certainly helped and he did some good balancing and sit-to-stands (with pinkies). We then took things at a more leisurely pace and the four of us (Myself, Evan, Wayne and Charlotte) got a cab to "The Loop". This was the name of an old tram stop in this area and it has been converted into a 6 block stretch of shops, restaurants, and (gulp) bars. We sat outside a bar to start with and had a drink - I was a little concerned that we needed sunblock - genuinely !. We then had a wander round, it was pretty much the same feel as Covent Garden, although a little bit more "studenty", bit more bohemian and a bit more chilled (and no guys doing the silver painted statue thing).

We took a late lunch at Blueberry Hill, which gets penned as a St Louis "theme restaurant" but it's a little bit more "real" than that. Food was great, but I must admit that i'll be happy to get home and have a detox for a few weeks....PLUS - I will still never get over the fact that my favourite new drink (Schlafly Heifenweiz - a pale ale) occasionally comes served with a slice of lemon, but it's definitely a "beer". (kind of like Copper Dragon Golden Pippin).

Then we headed across the road to FroYo - which is a frozen yoghurt shop. This was a recommendation of Steph on the front desk and she was spot-on. As with Pappy's yesterday, there was a long queue - no greater recommendation than that. You can choose from any flavour you wish, and then it gets weighed at the end. Was lovely, just what we needed in the sunny evening. (honestly, if you had been here two-and-a-half weeks ago people were scared stiff of the ice-rain and today were out in shorts and t-shirts)

Quick jump into a taxi and head home for quick skype with Mums (although blighted with technical difficulties....) and where Ev and Char played for a little while. They always play really nicely together and it was good to see Ev have someone else to play with. However, they were both tired (and perhaps there were a couple of tired Dads as well...). So, an early night it was. 

Big week coming up.....

Sunday, 20 February 2011

Evan Whitton's Day Off - Day 29 - Sat Feb 19th

"I've said it before, and I'll say it again. Life moves pretty fast and if you don't stop and look round once in a while, you could miss it...."


So, we met up with Wayne & Charlotte to plan the day ahead. We got Ev's stretches and PT homework out of the way early on, although he definitely seems very tired. He has had a full on week of PT - probably the first, and only one he will have, when he has been firing on all cylinders. So he definitely deserved a day off. We joined up with Steve, Sarah, Holly & Lucy (Man U fans - so we outnumbered the one who wasnt...)  and we made our first stop at Tigins - as we had discovered it was showing the Man Utd v Crawley game - my first game of soccer for more than a month. Well, I need to start reacclimatising I guess....

After that, we walked a couple of blocks down, and through the park to the Arch. However, while it is very quiet during the week, there was a mass of people there today. Cant blame them, I'm still simply in awe of it. As you walk around and view it from different angles, you get new and more complex views, with different lines and the reflection from the steel is bedazzling. Unfortunately, there was about a 3 hour wait for a trip to the top so we will have to revisit later on. However, I am definitely taking Ev to the top. The highest part of the big journey.



We had passed "Laclede's Landing" on the way down and, having read about it, we decided to take a look through. It was basically an old, St Louis cobbled street, lined with bars and restaurants, and then it was off to Pappy's Smokehouse- which was Wayne's special request for somewhere to eat. Apparently, being on "Man vs. Food" is a wonderful recommendation (http://www.manvsfoodfans.com/missouri/pappys-smokehouse/ - about 7mins in). It's difficult to explain, but it's basically best to sum up in one word; MEAT. Quite a basic spot, but the queue to get served was approx 45 mins. Which I guess says something about it. We actually managed to swing getting a table straight away, and it was great food, as well as a great experience.

We hopefully burned off a few calories by walking down to our final venue, The Chaifetz stadium to watch the basketball. Having been previously, with Maya, the Smithsons and the Wardleworths, I definitely wanted to go again. We weren't let down,as the atmosphere was equally as bonkers as my previous visit and everyone loved it. I simply cant explain what it's like. So im not even going to try. Instead, I will let you watch Ev's response at the end of the game.









Friday, 18 February 2011

Got that Friday feeling ! - Day 28 - Fri 18th Feb

Everything seems blue today. In a good way. The sky is the most clear blue, and the trip to the hospital, with the clear city landscape around us was amazing. Michael, the shuttle driver was playing some Muddy Waters and was telling us about a few places where you could catch the blues. Hopefully, we will do that on Sunday.

We are also going to watch the St Louis Blues (Ice Hockey) on Tuesday and the Billikens (who play in blue) tomorrow. The reason for this more tourist like activity - well, we are being joined in St Louis by our great friend Wayne and his daughter, Charlotte. While Ev knows that Wayne is joining us, he doesnt know about Charlotte coming. I cant wait to see the look on his face. Which will actually be in the next hour, they have just landed as I write this. It will be so good for Evan - he has been through so much, and im sure he is SO bored of spending all his time with me. So, in amongst the last couple of PT sessions and some PT homework, we will try and get out and about. Weather permitting... there is the still the chance that it could turn for the worse. 

Earlier in the day, we had skyped school which was absolutely great (although was a little shy to start with) and the PT with Erica was great also. Did some really good work - am constantly amazed by his effort. Afterwards, I said "good work, Ev!" and he said "No it wasnt work- it's just exercise..."

Apologies for the shorter blog than usual, but we have to go get ready for our guests, and let the weekend begin. 

Sure aint got the blues ....... !!!!

Busy, Busy, Busy - Day 27 - Thursday 17th Feb

A very busy day today, albeit with a slow start. Ev woke up at 7am (oh, how I hope that continues when we get home....) and we got ready (which included a set of good stretches - left hamstring and heel-cord are definitely still a bit sore. Will need to work on this) then sauntered down to breakfast at 9am (for the last half-hour).

A few weeks of cooked breakfast gets a bit much, so I have been on Frosties, OJ and Coffee for the last couple of weeks. I know - brit abroad.... Ev was still a bit fed up as his tooth wasnt for moving, but I managed to get him to tuck in. On the way to the lift, back to the room, Ev tugged on my sleeve and gave me a big grin. Actually, one little bit less than a big grin. His tooth had come out - we arent sure where. So - not only do we have to handle the UK/US conversion of the tooth fairy, there is a missing piece of evidence to consider as well. Try explaining how this will work out...

We popped up to see the Fox family and make arrangements to meet up later in the day and then back down to the room to Skype home. Even Sam, the usually elusive youngest child made a visit. Im sure he has missed us, but he hasnt wanted to speak to us before, but he wanted to have a proper conversation with Ev and said "I've been to America with you....". He can even spell out his name on the PC and send it as a skype-message. The little things you miss....

Then we were at the hospital for an 11am PT session with Mike. This went well, Ev walked 13 minutes and 4 seconds at 0.6 mph. Which we think is a great achievement. Most treadmills start at 0.5mph but specialist PT ones go down to 0.2mph. However, Mike and Erica think we can get a standard one - and it will be fine for him. Plus easier to source. He also did a bit on the total gym and a small wipeout zone. I lost, again. So I am 0-2 in the Whitton Wipeout Challenge. 

Quick lunch then called the shuttle bus to get back to the hotel. Ev had a piece of homework - I got him to write his letter to the Tooth Fairy - strange, he is willing to do some writing when there are dollars in it for him ! He also wanted to do another circuit. The trick with homework, whether PT or school, is to make it look like something else. So, his circuit target was to go further than yesterday. Which he did with flying colours. It is shown here, in it's entirety (over two parts):






We had an hour, in which Ev took a well-deserved rest, and we stumbled across the American version of "Hole in the Wall". Crikey, it was poor. The "good" (?) thing about the UK version (I sincerely hope) is that 
it's done tongue in cheek - whereas the US version is kinda serious - and dont get me started on the catchphrase ("show me the hole in the wall !!!"....). Anyway, I digress... We had a quick "good-night skype" with Loup who is struggling with scurryings in the attic. Possibly, Mice, Squirrels or very heavy footed Spiders.... and then met up with the Foxes for an early dinner. The reason for this was that we had to get back for Winter Wipeout. Priorities!

As it was such a nice evening, and we were a little early, we took a little walk and found a nice street of bars. We sat outside one bar and had a drink, while the kids played on their DS' of course! It was quite humid, yet relaxed and reminded me of an evening on an early summer holiday. As I mentioned previously, this isnt a holiday but now that we have only a few PT sessions left and our friends are joining us, there is the opportunity to turn this into something resembling a holiday. Ev's been through a lot - we simply take for granted sometimes what we are putting them through - so he deserves a little fun. Real shame that we cant include the whole family but we will try our best.

The day still wasnt finished - we had a lovely meal at Applebee's and then got back to the hotel in time for PJ's on, teeth brushed, and positioned ready to watch Winter Wipeout. 


As I said last week, there is nothing more wonderful than sitting with your child watching something like this. When the first break kicked in, Ev said "that was the best 11 minutes of my life". 

Money well spent then...

Once it was finished I had to try and get him to wear his night braces and, as he was starting to rub a little on one heel, I was looking forward to this even less than I expected. However, as with everything this trip, he simply said "ok" and let me put them on. He's asleep now. Happy little soldier, after a busy long day ! 

Thursday, 17 February 2011

500 steps! - Day 26 - Wed 16th Feb

Another lovely day in St Louis.

In the same way that ice-rain was a surprise, so are the slightly humid spring days that we are now experiencing. Two weeks ago, everyone was wearing massive winter coats, scarves, hats and having to scrape literally inches of ice from their windscreens. This week, by comparison, people are out jogging and I havent needed my coat for best part of two weeks....

As mentioned in the last couple of blogs we are winding down to the last few hours, even minutes of PT and the team are still really impressed with Ev's progress. We are so keen to try and squeeze every drop out of these last few days but it's a balancing act as we dont want to exhaust him, and it's now feeling like the end of a long trip. Today, he tried to do some work on the bounceboard - which is basically a trampoline, set at an angle, which you throw a ball onto and it returns it. Before he can do this, Ev has to stand tall (supported). This is really tough work for him and he did struggle a little.

Next up was the biodex machine. This measures the strength of Ev's legs by applying force while he is sat down and he has to fight against that.



He has been measured at various stages and, notwithstanding the impact of the second op, he has moved from 59 / 72 (left leg / right leg) to 71 / 71. Which is really impressive as it is tangible proof that he is building up.

Finally, he did some basketball hoops, which were revisiting the standing up from earlier.

Once we got back to the hotel, and had had some lunch, I managed to talk Ev into doing some extra work. Anyone who knew Evan before the op will know that he is full of energy, even if his body couldnt always catch up - but he definitely seems more tired, generally. Obviously, part of this is the impact of the ops and the PT but he isnt able to get about as much, so there could be a bit of lethargy building up.

Anyway, we did the circuit which we had designed previously. We walked from our room to the lift, went down to the lobby and did a couple of laps, then back into the lift, and back into the room. [The hotel staff are obviously used to seeing the hotel lobby being used as a training track and he was greeted with calls of "good work, buddy", kind words and smiles from everyone we passed.]. He walked well over 500 steps. In many respects, he is sort of back to where he was before the op. In fact, he could probably do much more, much quicker, but with much less quality. He is now placing his feet down strongly, firmly and flatly. So much improvement - which gives him a massive platform from which to launch himself from. Perhaps even literally....



All that said, it wasnt plain sailing and we (well, HE) had a few things to cope with. The following makes his progress even more remarkable. Firstly, one of his front, top teeth is coming out and has been really lose for the last couple of days. It seems to be really sore and every time he tries to eat or drink he winces. Secondly, kids with CP tend to suffer from constipation and Ev is at the moment. 'nuff said.....

Unfortunately, things caught up with him and he didnt want to stick around at tea with Jack, Holly and Lucy. It was a shame but, in the circumstances, i'll let him have a rare moment of grumpiness. I'd also like to think that he really wanted to get back to bed as we were on the last three chapters of Charlie and the Chocloate Factory. (Now finished).

We still werent finished there as we got the night-splints today. These are similar to the braces which we have for during the day and they continue to stretch out his hamstrings and heel cords. So, I put them on, strapped in his feet and left him to settle down. Long story, short... (well, 30 minutes) I gave in. He was so clearly uncomfortable with all three things going on that I just couldnt do it. Hopefully, a delay of one day wont have a massive impact, and I probably should have been tougher, but he has worked so hard....When I took them off he said, "thank you, Daddy - thank you so much, I feel better now". He certainly knows how to charm, and he was indeed sleeping in about 5 minutes.

Finally, our special guests are safely in the USA and we will see them in less than 48 hours. Cant wait to see his face when they arrive....

Wednesday, 16 February 2011

It's up to us - Day 25 - Tues 15th Feb

For the last 25 days we have been in the cocoon which is the SDR family experience. Even with the outside influence of other families (for us, the Smithson, Wardleworth, Rashbrook and Fox families), the hotel and hospital staff as well as our ubiquitous friends; gmail, facebook, twitter and the bbc football page, it is very easy to get used to it. You even get used to not being home - to a degree. Every day you do the exercises and stretches and get to PT. Each day of PT is different, is building up the kid's muscle memory and giving them the tools and techniques that they need to change their lives. However, at the end of the day it is up to them, and equally as importantly it is up to us, to make the use of those tools. Obviously (given that it was 7 yesterday) we now have just 6 hours of PT to go. I cant actually begin to comprehend how we are going to get from here to there. Or even where "there" might be....

As we get into the last 10 days or so, it's nearly as scary to be looking forward to leaving, as it is wonderful to be looking forward to getting home (although going home definitely wins!). It's going to be up to us to make the most of this wonderful opportunity that we have been given. A lot of pressure to be honest but Evan, like all of the SDR kids that we have met, seems to have this inherent determination and intent to succeed. 

Each day, even when he has been a bit down, Ev has really put every ounce of himself into PT and it's a bit humbling, but also inspiring. So much effort sometimes, that he is simply shattered afterwards. He did an unbelievably good session today - 16 minutes 27 seconds on the treadmill (forwards, backwards and sideways), did some good work on the total gym and then did a mini version of the wipeout zone, which Erica masterminded. (He has asked me to point out that he beat me,and therefore is current reigning champion of "Whitton Wipeout").

It's going to be tough, but I think we are in safe hands... 

Tuesday, 15 February 2011

7... - Day 24 - Mon 14th Feb

On the way back home from PT, in yet another gloriously sunny St Louis day (who'da thought it...), I realised that this was the number of hours of PT that we had left. Doesnt really seem that much - even with the progress that  Ev made last week and the more positive experience of sunday.

First thing in the morning, Ev did a real good set of stretches but he was still unsure on his frame. (see below).

 Before looking at this clip, please note it's not a particular happy one, but is relevant later on....



The PT session itself was good, however as Mike let Ev do a bit more himself (such as not holding onto him as much on the treadmill) it had the feeling that he was taking a small step backwards. Even though I know this isnt the case. In fact, we have a couple of goals (which I dont really want to disclose here) but Mike thinks we are still on track. We were also provided with his new braces during this session so we had a shoe shopping trip to sort out.

So, in the afternoon, we popped down to Footlocker, and we picked up a pair of sneakers ("sneakers" ? ~ well, when in Rome...) that fitted over Ev's new braces. My homework for the afternoon was to try and be a little less "hands-on" with his walker so that he could both build up his strength and confidence on it. Working under the subterfuge of doing the laundry (the lengths a parent will go to...) I got Ev to walk down the hall on his frame. This is literally a distance of no more than 5 meters. However, I got him to stand still and tall on his frame while I went back to the room for the washing then again for the detergent. Then also got him to stand still in the laundry room while I put the washing in.

Mike had explained that his braces would help - but I didnt realise this much.... ! Totally different from the attempt earlier in the day.

So far, so good and I felt that I had probably got a B+ for my homework. However, Ev now knew what he could do. So when I opened the laundry room door for him, he was off. So I left him to it. He took a few steps on his own, and was soon counting the number of steps - which was now 90, 91, 92,.... I dashed for the camera and managed to get the following clip.



I was amazed, gobsmacked, dumbfounded. In the end, he got to 152 steps and already has his sights set on 200 tomorrow. I think we might well have an "A" for our homework....