Sunday, 20 February 2011

Hard work

The last two weeks have been really hard for Evan.  Physio is going really well and all the physios involved are reporting progress.  This is down to their hard work and the continued therapy at home.

Evan is only three and he rarely complains when he has to stretch twice a day, wear his knee immobilizer for an hour at a time and endure prodding and pulling. He is getting quite tired and he has started sleeping in the afternoon quite a bit.  He is using a lot more energy, so it is to be expected and we are going to up his snack intake to try and help him.

We have taken Evan out on his bike a few times and he is much better at pedaling.  He doesn't have to wear leg calipers anymore which is great. Before surgery he couldn't start himself off on his bike, but now he is able to do this.  He has also started back to swimming and is starting to get the confidence for me to let go a little.  This would never have happened before as he would have rolled over from being too stiff. 

He is now managing to stand unaided for 30 seconds, but still needs something behind him to give him comfort. The biggest gain has been his ability to lift his foot while standing unaided to try and step.  At the moment however he is then falling backwards as his balance is not quite there.  Still, this is a massive step for him and hopefully in the next post he will have managed to do it.

I also hope to have some photos to share next time.  We have some videos which I will try to update this post with once we download them. It's been a difficult transition from being in America to coming home for all of us.  Trying to juggle work, home and physio is a challenge, but we are getting there.

Tuesday, 1 February 2011

Back home

Well we have left our St. Louis home and the wonderful people there and are now back in Wales.

Michael and Beth

We miss them all, but will see Michael at least this weekend in a party in Daventry being held for families that have been for surgery and families going for surgery.

Now we are back we have been trying to get back into a routine.  The first week was difficult as we were all jet lagged until at least Thursday.  We have been trying to fit in his physio, stretches and other activities like cycling, but it has been hard with us being in work and Evan being in school.  I want Evan to enjoy school with the other children so physio is really off limits.  Sasha is doing a fantastic job with him and he is really coming on, so although it isn't perfect, I don't think we should beat ourselves up if we don't do everything.

We have started physio sessions and had a really positive first session with Stephanie is NHS physio, then Sian who covered for her whilst she is on holidays.  this was lovely as Sian was Evan's physio when he was a baby.  We also have a private physio who is working with us and I am positive with this combination and a potential extra session from the NHS that Evan will grow in confidence and strength.

So what progress?  Well Evan is now getting up from his bench himself, standing and balancing.  The clip from youtube below shows how much he has come on as we could never imagine this before surgery.  We are sure he will walk within the year.

We did a piece for the Echo and ITV Wales to show his progress.  He is doing really well walking on his sticks and is actually asking to go on them.  Prior to this week we were really struggling to get him to use them and he wanted his walker.  He now understands his walker is for outdoors and his sticks for inside.  Coincidently today the Fire Service was there and he had a real treat being taken around in the fire engine.

The links to the Echo online video and article are below:



Last weekend we met up with Taliesin Campbell, his parents Claire and John and his brother Gethin.  They are now fundraising for the same surgery as Evan and I hope seeing Evan has given them a glimpse of what could be in store for Tal.  We will be helping with the fundraisingand will post details of events to Evan's facebook page headed "Tal's Good Feet".  If anyone wants to know more about Tal or help out then please take a look at his website at:

By the time I got to publishing this update we had already been to the SDR party.  What a fantastic night.  Didn't get to speak to everyone as it was so busy, Evan wanted to walk around constantly and we were running around after him.  Met some great families looking to go over for the same surgery and caught up with some Facebook friends.  Evan loved the Magician and meeting up with Michael again.  Thanks to Dr. Park and Joan for the gifts - they gave gifts to every child which says a lot seeing as some people warned us about the commercial side of USA medical services.

I have pictures of the night, but will post later so I don't delay.  However, you can read some of the stories of the children below as there was an article posted in the Daily Mirror:

Daily Mirror

Thanks to everyone who has been following the blog and for all the support you have given us on our journey.