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 !


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......