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.
Thursday, 24 November 2011
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.
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....
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...
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
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......
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......
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