Sports day

Evan has been working very hard because he wanted to do sports day on his own. 

 For those of you who follow him, you will know that the last two years sports day has been completed with a walking frame. 

Well he did it! 

http://youtu.be/YjgXCo3F6U4

http://youtu.be/pB6co-n4EZ8

He was so happy and afterwards we went to the pub for tea.  He just kept on walking.  

http://youtu.be/-IMro7ltyhs

Since then the dreaded growth spurts have come, but after a week of falling over and being like jelly he gets back to walking again.  It's not perfect and he needs to be supervised, but he's getting there. 

In 5 weeks we will be back in St. Louis, probably for the last time.  Very excited to see what Dr Park says.  

X 

Long time coming

I can't believe I haven't posted for so long.  It seems like life just went to normal and we have been getting on with things like any other family.  Evan is now nearly 6 and is going from strength to strength.

Last time I posted that Evan could walk 175 steps in one go, well now he is just walking.  it's not perfect and he still falls, but he is getting there.

He has been attending sessions at MP Fitness in Perth and Mike Poole has been fantastic with him.  Evan tends to lose focus and Mike's attitude and way of working makes sure he keeps on track.  After the last sessions there Evan walked up a grass bank on his own.  He hasn't done it since, but he has done it and that's good enough for now.

These videos are clips of his walking and walking up the grass bank.  His carer Sasha is behind him for safety but not helping him.

https://www.youtube.com/watch?v=ZahIRxP6jFo

https://www.youtube.com/watch?v=ANrSM0z0-T0

https://www.youtube.com/watch?v=ZuVHyJjfXSU

We were very lucky recently to attend a party in Daventry with many other families who have children pre or post SDR surgery.  Also a number of the team from St. Louis came over including Dr Park and some of the physio team.  It was so wonderful to see them all and so refreshing that they made the effort to come all this way from the USA to celebrate our children's' successes.

If you want to see how much our children mean to Dr Park and his team please take a look at this video, but get your tissues ready.  http://www.youtube.com/watch?v=BPtVBxj0CME

I will try not to leave it so long next time and aim to update you after Sports day. I'm hopeful after many years in a walking frame that Evan may be able to complete it unaided or with sticks.

One Year on

Well it's been a really quick year, it's flown by.  Next week will be the one year anniversary of Evan's operation and we will be raising a glass or two for sure.

Firstly, THANK YOU to everyone who has got us to this point.  This Christmas and New Year are going to be the best ever because of you.

Evan continues to get stronger.  It is taking a bit longer than we thought to get him walking, but he is getting there slowly.  In school he is now walking with crutches or independently.  His independent steps are slow, but they are independent and he has achieved 175 steps in one go.  He is so much more confident and can do things for himself now like raiding the treat cupboard, walk to the bathroom, climb the stairs.

Only a short update, but hopefully you like it.  Happy Christmas to you all and a Happy New Year.

Paula, Steve and Evan x

Promised pictures

So last time I posted I said I would put some photos in.  2 months later and here they are :@)

We went to Florida in the summer because Evan really deserved a break.  No physio the whole time :)

As you can see, I should have stayed at home and dressed in character costumes, it would have been much cheaper

 When we returned we had a fabulous party for Evan's birthday.  Evan couldn't wait to get into his pirates outfit.  He was able to get much more involved with the games, becasue he is much more mobile now.

Evan has started full time school and here he is the first week.  He loves it and is integrating really well.  The other children push him on and he has managed 39 independent steps so far.   He is growing all the time and this tends to set him back, plus he has hypermobile joints which really makes it twice as hard for him to progress.  However, he can do many things he couldn't previously such as horseriding:

We would never have put him on a horse before surgery, he would have fallen off and this was a big horse.  The reduced spasticity in his legs means he can really work the right muscles to stay sitting.  He is also doing well at swimming, although both horseriding and swimming are out of the window for 6 weeks as he had a minor operation on the weeked, which means both are banned.  There is also a big improvement in his cycling as well; no more stop start, stop start.

We have been for a review of his hips which was the main reason for having the surgery.  It was felt that if it was delayed the hips may dislocate.  The good news is that there is an improvement, so looking good for no further surgery there.  If nothing else happens we have this to be thankful for.

The only concerns we have at the moment are with his joints, which are extremely bendy.  This is hampering his development.  We have discussed with Dr Park and will be heading back for a week in St.Louis in April next year.  We will see Dr Park, Dr Dobbs (Orthopedics) and also have physiotherapy.  We are looking forward to the return visit to get the expert help, but also to see all the people at Children's Hospital that have helped Evan.

Next update when we have something brilliant to tell you.

Step by Step, Closer and Closer

Firstly, apologies to everyone for not updating this blog more regularly, working, physio and the rest is hard work and leaves little time.

There hasn't been much to report, but about 3 weeks ago Evan started complaining his hip was hurting so we really slowed things down.  He hadn't been progressing and we felt he was dragging his legs more and not responding well to physio.  This was quite disheartening, but after a few weeks we stepped it up again - I think he just needed a rest.

He has started wheelchair basketball now and is really enjoying it.  He gets chattier and chattier by the day which is good but means he doesn't listen.  I've been told this is normal for a nearly four year old.

The big breakthrough happened this week.  earlier in the week he went for a session with Bobath which was quite intensive.  the next day he stood for 8 minutes unaided and took 18 consecutive steps, then 10 consecutive steps.  It was amazing.  He had been trying to earn his Toy Story 3 Nintendo Game for about a month (30 steps) and then he just blew it out of the water.  The next prize was 40 steps for an Elefun Game.  His private physio came and he did the whole lot - actually 50 - in the session.  Not all together, but it's a huge leap for him to even walk for 50 steps bit by bit, 10 at a time.  Later that day he still wanted to do more so he could win the next prize - it's gone up to 70 steps now otherwise I'll be bankrupt.

Lots of great things happening.  he will start horse riding to help his core stability in August and swimming lessons in a few weeks.  He is so much happier now and is proud of his walking achievements.

At the end of the month we are taking him to Disney in Florida.  This is his big treat for his birthday while he is there and for all the things he has gone through over the last year or so.


If anything major happens I will write again and will also try and keep posting on his facebook page.  Thanks to everyone who made this happen.


Paula

First Steps

A lot has happened since my last posting.  Evan has been working hard in physio three times per week and adding in swimming, cycling and daily stretches/physio with Sasha.

It looks like it is starting to pay off.  His private physio Liz had him stepping over high hurdles using his sticks, something he would never have done before.  The You Tube video below shows him doing this really well.  He has also started walking with one stick only, especially in school.

 Evan Hurdling

One of the biggest breakthroughs has been Evan's ability to balance unaided, starting with 30 seconds and moving up to 2 1/2 minutes.  It has really helped him develop the additional gains we have experienced over the  last month and a half.

Evan standing

We finally saw the Orthopaedic Surgeon on Thursday in the UK who is happy with his progress, but he would like to check him in 6 months.  We need to reassess his orthotics for his feet however as he has some hyper mobility and we are not sure his feet are being fully supported by his splints.  This means his feet are bending outwards and this could cause future problems.  If we can't get an early appointment with the NHS, then we will have to go private.  The funds raised will help us achieve this.

The day after I went to Paris for a meeting and to catch up with some good friends who helped raise awareness of our fundraising efforts and contributed to us achieving our targets.  I was able to tell them all about Evan's success, not knowing that what I told them would be surpassed by the end of the day.  At 3pm I received the call to to give me the news I had been waiting for since the surgery - EVAN WALKED INDEPENDENTLY.  He started with two steps and then on to 5.  He hasn't managed so much since, but he has done it now and I know he will continue to improve month by month, day by day.  I have to give special mention to Sasha who works tirelessly with him and gets so much out of him.

Evan Walking Independently

THANK YOU TO EVERYONE WHO HAS MADE THIS POSSIBLE.

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.