MP Fitness week 2 - Daniel takes the next step!

We have come to the end of our two weeks in Perth, and tomorrow we start the long drive south!

It has been extremely tough, physically and emotionally, but part of the amazing touch that Mike Poole has is that his fairly brutal treatment seems to build the confidence in the children, not destroy it. Daniel has been hugely proud of his achievements and consistently positive about going every day, even when he has been reduced to tears during the session. He is visibly stronger and has made some dramatic progress.

Here are some clips and photos of this week's hard work.....

 

Tuesday's session was particularly special because Daniel was reunited with his friend Brooke! If you followed Daniel's progress while we were in St Louis you might remember that Daniel and Brooke had their SDR (and later their orthopaedic surgeries) on the same day. They went through so much together and they (and both families) share a very special bond. Daniel was absolutely thrilled to see Brooke, and both of them enjoyed working in the gym at the same time again (although with different instructors).

Daniel and Brooke both slogging away in the gym

Of course, nobody could work out in the gym all day, and there has been time for some relaxation too. We have visited Scone Palace (twice!), and have enjoyed some fun in the garden with Grandma, amongst other things.

On Wednesday evening, both children were thrilled when Daddy arrived, to join us for the final couple of days, and Dan was keen to show off his new skills!

So, what is this 'dramatic progress' that I referred to at the start of the post? The first is that this week Daniel has learned to walk with his quad sticks!

From now on we will be using his sticks to walk around the house, and walker when out and about, but hoping to move to sticks being his main method of walking within a few months.

The other major breakthrough is shown is this clip below - Daniel's first EVER two independent steps!

So, all in all, an excellent couple of weeks, and we will look forward to our next trip to MP Fitness in a few months. We now have the new exercise programme from Mike, which requires us to find another 45 minutes in every day. I have no idea how we are going to manage that, but we are determined to do so, because we now understand that the combination of strengthening work, in conjunction with the great physio input he already has, could truly help release Daniel's potential, whatever that may be.

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!

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......

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....

Sporty Daniel.......

Well, the sun has come out at last and Daniel has been putting his new found mobility to good use, and thoroughly enjoying it!

Firstly we have had school sports day, which took place the week before half term. Of course Daniel has taken part in sports day previously, but was always pushed in his wheelchair. This time he was determined to do as much as possible himself in his walker, and his parents were not the only people to feel a little emotional watching him! Here are some highlights. (Thank you to the parents of the other children shown who have given their permission for me to use the clip).

Carrying the hoop in the relay

The Dream Team - Dan with his two fabulous teaching assistants

Then, just a couple of days later, Daniel managed another huge new achievement. He SWAM by himself for the first time ever!!!  He has always loved being in the water but could not get his body straight enough to swim on his own. Here he is doing it for the very first time......

He and Lucy share a private swimming lesson, but while Daniel loves being in the water, Lucy generally prefers to do this.....

Not content with sports day and swimming, there has also been more horseriding (which as the parent watching, I must admit is now a lot more pleasurable now that it is not freezing cold!) We can tell Daniel is getting stronger because I no longer have to give him calpol the day after horseriding due to him being stiff and sore. That said, one week I did try putting him straight back in his walker when he came off the horse and his legs just buckled under him, so he is obviously working hard up there!

There has also been some football in the garden action.......

Plenty of hard work in physio is still going on in the background too.....

Of course, there's always a 'but' and the one negative bit of news is that Daniel's yearly hip x-ray showed that although his right hip has improved slightly, his left has continued to migrate outwards and is now 29% displaced. For anyone not familiar with CP, I will briefly explain. All babies are born with fairly shallow hip sockets. Once toddlers start to walk, the weight-bearing helps to carve out the hip socket and keep the 'ball' at the top of the femur in place. Children with CP are not weight-bearing in the same way, so their hip sockets remain shallow and flattened. There is also the double whammy of the spasticity in the adductors (inner thigh muscles) which as it pulls the knee inwards, is pulling the hip outwards. The upshot of that is that the hips of children with spastic CP tend to migrate out of the socket, and can eventually dislocate, requiring major hip surgery. That said, in Daniel's case, 29% is not into disaster territory yet, and he has now had the spasticity removed from his adductors by the SDR. Plus, of course, he is now weight-bearing and walking far, far more than before surgery. Unfortunately, the lack of symmetry in his body, which causes his left hip to stick out when he walks, is really not helping that hip stay where it needs to be. So, we have redoubled our efforts to work on the weaker side of his body, in order to try to straighten him up when walking, and stop that hip wandering any further!

Dan and Lucy are now back at school for their last few weeks in Year 2 and Reception, and we are starting to look ahead to next school year, and the challenges it will bring, including Daniel moving up to Juniors. Plenty to do before then though!

Six months ago today.......

It's a very funny thought - one year ago today we launched Daniel's fundraising website and we were right at the start of our journey. Exactly six months ago Daniel was in the operating theatre having his SDR op. This morning I watched him walk from the car, all the way round the side of the school, into the playground, say "Hi" to his friends, and join his class line, before walking into school. Just amazing really.

Here's a bit of video from last week. It's Daniel coming down the corridor to meet me at the end of the school day. He was singing away to himself because he had just had "such an awesome day". I have no idea where he picked up such Americanisms.................

Two steps forward, one step backwards.......

We knew that the rehabilitation and progress after SDR was very much inch by inch; tiny gains and little bits of progress, which when you look back every few months add up to quite noticeable changes. However, this requires the commitment to the intensive physio routine. After a very successful phase of physio during the Easter holiday we have been rather thwarted in the last month, because Daniel has had two separate bouts of illness, each resulting in around a week of lost physio time, as well as yet more missed school.

However, much as that was frustrating, progress has certainly not stalled altogether and Daniel continues to inch forwards.

Here are a couple of clips showing new skills. The first one is Daniel managing to rise up on his toes. He is standing in the parallel bars so able to use his hands on the bars to help push, but this is the first time he has been able to do it, and a sign his calf muscles are getting stronger. The clip also illustrates why he wears splints with shoes to keep his feet in good alignment, since he pronates quite badly (ankle rolls in) particularly on his right foot. That's a very common CP thing.

This second clip shows Daniel's first real attempt at walking on his knees. He's not quite there yet, but it's coming along. Please try not to look at the messy room behind him. I would like to claim it isn't normally like that, but that wouldn't be the truth........

Before he became ill, as well as the walking he had been doing inside school, Daniel had started walking round every morning from where we park the car to the playground at the back of school. It's a surprisingly long and challenging walk for him with several bends, small slopes up then down etc, and as you would expect, there are children and parents all around, which makes him a bit nervous. However, he thoroughly enjoys being able to stand in his class line with his friends.

He is now out of his tall splints and wearing just his small splints almost full time, although he has not yet walked for more than about 20 minutes at a time in them, and there are signs they may be rubbing a little. We need to keep an eye on that.

Since I spend so much time on here talking about how hard Daniel has to work at his physio etc, I thought I would add one photo of his leisure time. Daniel does not read much for pleasure because his scanning difficulties, as well as the physical challenge of sitting up, holding a book etc, make it extremely tiring for him. He also struggles with full pages of unbroken text, although he is quite capable of reading the same text if it is broken up. However, he has recently discovered old-fashioned Star Wars comics, which can be bought weekly from the little comic shop in town, and he likes to sit propped up in our bed at the weekends to read one.

We are coming up to six months after Daniel's surgery, and will soon start making the video to send to St Louis for them to assess his progress at this point. We hope they will be pleased with what they see!