Sunday, 28 July 2013

MP Fitness - end of Week 1!

It has been a tough old week, with Daniel pushed to his limit... and then beyond! There have been a fair amount of blood, sweat and tears. Well, ok, no blood, but the sweat and the tears were certainly there!

Daniel has worked really hard. We knew he was weak, and in some ways it has been nice to identify exactly which muscles are the really weak ones, and start to focus on them. On the other hand, nobody likes to be constantly reminded of their deficiencies.....

He has done a lot of core work, and also some leg work. Mike is very funny, and makes Daniel laugh, but he is also very strict, and is completely unmoved by tears!

Daniel's hard work has included-
  • Some asymmetric work - very difficult for Daniel to have the two sides of his body doing different things, especially at speed.

  • A lot of core and balancing work. In this photo Daniel looks like he is having a nice sit on Mike's knee. In fact he is working extremely hard on balancing, without being able to use his legs at all, and finding it very hard indeed!

  •  Practising standing balancing. When Daniel was wearing his tall splints a few months ago he could balance for a few seconds. However, since going down to the small splints, which give him much less support, he has found this a lot more difficult, and has never managed more than a couple of seconds. Mike is hoping to improve that by the end of next week.
  •  Total gym work, to strengthen his legs, both with both legs at once, and just one leg at a time. This is very valuable since Daniel's right leg is stronger than his left, so when pushing with two legs, he will still put more weight through his right. Hence the need to work both legs separately.  

The low point of the week came on Thursday, when Daniel was forced to confront his phobia of the treadmill, which has been steadily increasing over the last couple of months. The treadmill here is particularly difficult for him because the handrails are at shoulder height for him, so although he can use them for balance, he can't bear any of his weight through his arms at all (which is what he is used to doing in his walker). He has to weight-bear entirely through his trunk and legs, which might not seem like a big deal to you, but certainly is to him, and he feels very unsafe doing it. On Thursday he had rather a panic, which eventually became a full meltdown. I was asked to leave the gym (I was ready for that, because I had seen it happen to other parents the day before. It was distressing, but I knew it was coming, and could still watch through the little window!) Mike calmed Daniel but made it very clear that the tears were irrelevant and would make no difference to whether Daniel went on the treadmill or not! Eventually he went back on and managed the allotted time, still hiccupping! However, that night he proudly told Daddy on the phone that he had "conquered his fear of the treadmill"! I must say I was not at all convinced, cynical mother that I am, but sure enough on Friday morning, when we arrived he said to Mike "I'm ready to go on the treadmill", and he did! He wasn't happy on there, but he managed it, and I was bursting with pride at the courage he showed!

He has also been taped up with kinesio tape for 3 days, on both legs and his left arm. It has helped to stop him hyper-extending his legs when walking. I think the feel of it took a bit of getting used to, though!

Mike has taken the hip supports off Daniel's walker, and locked the wheels, as well as tilting it forwards slightly. That has made it quite a bit more difficult for Dan, as he has to bear weight fully through his legs, while lifting the walker to turn, and he has no hip support to lean against. He has a tendency to walk close to the left of the walker, I think for security, because his left leg is weaker. So, Mike has put an elastic tie thing (it has an official physio name, but I can't remember it right now) round his waist, to pull him back into the middle as he walks. It is all intended to make him work harder, and it does.

Today has been our one day off, and we have had a lovely day at Pitlochry with Grandma (who is here for the whole two weeks to help) and Grandpa (who has joined us for the weekend). The children loved the 'wibbly, wobbly' suspension bridge and both had fun jumping in puddles! Dan managed to walk all the way across the bridge and back with his new walker set-up, even though he clearly finds it more difficult.

Tomorrow we start week 2. Bring it on!

Tuesday, 23 July 2013

Summer holidays are here......bring on the physio!

Well, we finally made it to the end of term, but there's no rest for Daniel! The children and I, along with my Mum have come up to Scotland for Daniel to have two weeks intensive fitness and strength training at MP Fitness. Mike Poole specialises in building strength in children who are pre- and post-SDR and we had heard many good things about him from other SDR families. The course is very intensive, with two hours of training, five days a week, for two weeks.

Today was Day 1, and Daniel was able to have a slightly gentler introduction, because the first hour or so was mainly talking, to understand how the course would work, and also a big dicussion about diet, and how to add sufficient calories to Daniel's food. He remains very underweight, although he is just about putting on enough weight to avoid intervention beyond the calorie supplement drinks he is on (but not enough to avoid a lot of nagging from the paediatrician).

Then we went into the gym so Mike could assess the muscle groups where Daniel is weak, in order to plan where he will focus the hard work! Daniel worked well and really took to Mike, who made him laugh, while also taking no nonsense!


At the end, Mike gave us the summary of his findings (ie told us where he thinks Daniel is particularly weak).  In one way, it was rather depressing news, but since that's exactly why we have come, we can hardly complain!

We took the children out to lunch afterwards, to celebrate a successful first session, and to replace all those calories Daniel had burned off in the gym!

Tomorrow Dan will have his first 'full on' two hour session, but right now he is looking forward to it. Long may that continue......

Monday, 1 July 2013

Three more weeks......

Like children (and teachers) up and down the country, Dan and Lucy are staggering towards the summer holidays, with three more weeks to go until they break up.

Daniel continues to work very hard at his physio, and we have also managed to improve his school attendance over the last month or two to more or less one hundred percent (a big achievement considering what he has to fit into his week). It will be rather too late to make an impact on his overall attendance for the year though.

Daniel now has a pair of quad sticks (walking sticks with four feet on the bottom to make them more stable). So far, he is just standing in them, working hard on being symmetrical, and on pushing the left stick down, because his tendency to lean to the right means the left stick floats up off the floor. The walker lets him get away with putting more weight through his right, but the idea is the sticks won't and he will become more aware of making his body straight. Over the next few months he should start to walk with them too, but that will inevitably involve quite a bit of falling, so his physio is sensibly working on 'learning to transition between levels' (aka learning to fall without hurting himself!) before attempting much walking with them.

This (below) was the very first time he stood with his sticks a couple of weeks ago - concentrating very hard on staying straight, hence the solemn expression.

Daniel has also continued to make visible progress with his swimming every lesson. You may remember that a few weeks ago he swam independently on his back for the first time. Well, this bit of video shows what he managed in his next lesson....

Yesterday, instead of Daniel's usual Sunday riding slot at RDA, he had the opportunity to ride in Gotherington Show.  The biggest challenge on arrival was how to get Daniel across a field of long grass, which was fairly inaccessible to either walkers or wheelchairs! He got about this far from the car in his walker...

....before we decided that wasn't going to work, and had to resort to two of us pulling him backwards across the field in his wheelchair!

Once we made it across to the RDA team and Daniel was up on his horse, he and his horse Bilbo had to do a course involving several challenges, including moving a tin can from one post to another, going over a (very low) gate, and taking washing off a line! He got a rosette for his efforts and was absolutely thrilled with it! We are so grateful to the volunteers from Cotswold RDA for all the effort they put into giving the children this opportunity. Also to Mrs Kimpton, one of Daniel's teaching assistants (plus Amy and Louise), who came to support Daniel, and helped me drag his wheelchair across the field!

Last week we also had our feedback from St Louis, after sending over Daniel's six month post-op progress video, which had been reviewed by Dr Park and Deanna Walter. They wrote "We are both very impressed with his walking, he has made huge progress!" Well, we knew that already of course, but it was great to have them confirm it! They also gave us some ideas of what to focus on next, as well as some advice and reassurance about Daniel's hip migration.

So.... three more busy weeks until the summer holidays. There will be no rest for Daniel then though (or not initially) because we are off up to Scotland for two weeks intensive physio and fitness training at MP Fitness near Perth. Mike Poole is a personal trainer who specialises in working with children pre and post SDR. We know it is going to be extremely hard work, but are looking forward to it! Roll on the summer holidays....