Friday, 21 November 2014

Two years post op.....

Last weekend we celebrated Daniel's two year 'operversary'. In some ways that time seems to have flown by, and in others it seems to have been a long slog of physio and general hard work! I wish I had kept record of exactly how many hours of physio Daniel has done in the last two years - as a rough estimate it would be well over the 500 hours mark now!

As this two year point, we are reasonably settled in the routine that Daniel has two one hour sessions each week with his private physio, and two one hour sessions at home with Rich or with me. He swims every other week, and also rides most Sundays in term time.  He continues to walk as much as possible, as mentioned previously using his walker all the time at school. The difficulty is finding enough time for him to practise walking with his crutches. He does this during physio sessions at school but is not good enough in them yet to use them in school apart from this. We also try at home, but struggle to find the time. This is one of our targets for the next year. Daniel has also set himself a couple of other targets, which I will share with you as time goes on.

Each anniversary is a good time to look back and to celebrate, and although we beat ourselves up and always feel we are not doing enough, sometimes it is good to stand back and look at how far Daniel has come.

These two photos were taken to celebrate the 'operversary'. One of Daniel standing independently, and one with his crutches. He couldn't do either of those things a year ago, on his one year 'operversary'!

Interestingly, if you look carefully at the top photo, you can see the way Daniel stands, putting more weight through his right leg than the left. He still struggles to bear weight through his left leg to the same degree and still has a tendency to stick out his left hip when standing or walking (you can also see that in the bottom photo). His physio thinks this may be a sensory issue. Obviously this is not good in terms of alignment of his body etc, so we just try to correct where we can, remind him, and try to help him feel when his body is not straight, which is really not as simple as you might think!

On the upside though, despite Daniel's imbalance, his latest hip x-ray again showed an improvement. 18 months ago, six months after surgery, his left hip was 29% subluxed (40 % being the point at which they will operate). A year ago that number had come down to 19%, and the latest x-ray showed it as 14%!! That is a result of Daniel doing so much more walking and weight-bearing through his hips. It is not to say that we are out of the woods yet, we will continue to stress about his hips for years to come, but at least we can breathe a sigh of relief for now.

To celebrate Daniel's operversary, we went bowling and out for a meal. It was lovely to see Daniel being able to stand and hold on, then pushing his own bowling ball down the ramp.

In recent weeks Daniel has also had the chance to try powerchair football! The Cheltenham Saracens Powerchair Football Club has been launched, and is running sessions every couple of weeks. Unfortunately, they are on Sunday mornings, which is a clash with Riding for the Disabled for Daniel. This is a huge pity since Daniel has precious few 'leisure' activities, and he would dearly love to do both. At the moment, he has just been to powerchair football on the Sundays when riding is not happening for some reason.

As I am sure you will appreciate, every little boy loves the chance to play football, and this actually gives Daniel a chance to do it! As all the able-bodied adults who have had a try will verify, it is quite difficult - considering the size of a powerchair, even allowing for that fact that the football is larger. For instance, Daniel has been learning that if he wants to send the ball to the right, he needs to drive his chair round to the left hand side of the ball, so that the ball can bounce off the right hand side of his chair. It is great fun for Daniel, but also brilliant for developing his spacial awareness, and power-chair skills. As always, I am so grateful to the people who give up their time to make these things happen, despite the hassle involved. Daniel will continue to go whenever he is free on a Sunday morning.

Friday, 3 October 2014

October already??....

It's been a VERY long time since I last managed to do an update, not for any reason other than the weeks fly by in a busy blur.

In late August we were lucky enough to spend four nights at The Calvert Trust on Exmoor. For those who have a member of their family with a disability this is an amazing place, and I would certainly recommend it! It runs activity holidays where the disabled and non-disabled members of the party are treated equally and take part in all the activities together.  This - the 'together' bit is far more of a big deal than it seems. It is obvious that many of the activities Lucy enjoys are not accessible to Daniel, but it is also true that Lucy is excluded from many of the 'special' activities that are put on for disabled children, for instance Riding for the Disabled, which Daniel enjoys on Sundays. Therefore, to see Daniel and Lucy (and indeed Rich and I) taking part in exactly the same activities, was just amazing. All the activities were accessible, using adapted equipment where necessary, for instance special harnesses for rope-based activities, a trigger-bow for archery etc. Needless to say, the whole centre was also wheelchair accessible, and Daniel really enjoyed being more independent in his wheelchair, saying "I'll meet you back at the room in a minute". As always, his self esteem was hugely boosted too by spending time with other people with disabilities.

Here are a few memories of an action-packed 3 days of activities....

And my absolute favourite video clip..... here's Daniel on the zip-wire (in the rain), having the time of his life!

Once we came back from holiday we were quickly back to school - Year 4 for Daniel and Year 2 for Lucy.

Daniel is busy with a similar routine to last year. His private physio sees him twice a week at school, and we do an hour of physio on Saturday and Sunday mornings at home. He also has swimming and horse riding. Daniel is very keen to be more independent, so we are also working lots on that, particularly dressing and undressing. He has been able to put t-shirts (both short and long-sleeved) on and off for a while now, but can now also get his underpants on and off. Here he is celebrating last weekend after getting out of bed himself, taking off his own pyjamas and putting on his own top and pants!! (He can't do his own trousers or socks yet but it seemed more appropriate to take the photo fully dressed, rather than just in his underwear!)

He also comes downstairs on his tummy, and we are waiting for some assistance from the Occupational Therapists (rather a long waiting list) to try to make our toilet adapted to help Daniel toilet himself a little bit more independently.

One final bit of BIG news - Daniel no longer has his wheelchair with him in school! He uses his walker all the time in the playground, and his TAs are just using his classroom chair (which admittedly does have wheels on the bottom) to move him around within the classroom and sometimes when a speedy move is required between lessons.  Of course, as you can see from the Calvert Trust photos, he still needs his wheelchair when out and about quite a lot of the time, but not having it in school is rather a milestone.

Finally, I wanted to mention the pupils of Glasshouses Primary in N Yorkshire. Daniel's third cousins Beth, Nell and Olli are pupils there. The whole school, inspired by Daniel's story have been inspired to help another little boy, named Sebastian, who lives locally to them, fundraise for his SDR operation. They have already held a non-uniform day for World CP Awareness Day this week, and one class's homework was to think of fundraising ideas! We are so touched that Daniel's story will hopefully be able to help another boy, who lives nearly 200 miles away!

Thursday, 14 August 2014

School Holidays Flying by.......

Well, I meant to update this again towards the end of our two weeks in Scotland, but as ever the days have flown by, and we have now been home the best part of two weeks.

Our time in Scotland was great! Because this was Daniel's third trip up to MP Fitness he very much knows what to expect now. Yes, we did have some tears, especially relating to his old foe, the treadmill, and he also started to get very tired towards the end. But he worked very hard and enjoyed himself, and as always, we saw a big leap forward in terms of progress.

Some action photos....

The major gains from the fortnight were that Daniel went to Scotland not having ever walked independently with his crutches, and now can. There's A LOT of practice needed, but we can certainly see the potential for this being a method of mobility for him in the long term. Although of course the crutches give him less support than the quad sticks (and much less than his walker) they will ultimately be much more flexible (the walker is of course big and bulky). They are also lighter than the quad sticks, and take up less space on the floor so he is less likely to kick them with his feet as he walks. So far, he is pretty good with the '1-2 - 3-4' pattern of walking (ie right stick, left foot, left stick, right foot), but the stiffness in his arms means he has a tendency to pull the crutches inwards, so keeping them apart and pushing them into the ground is the tricky bit.

The other massive leap forwards was in Daniel's independent walking! You may remember that Daniel only took his first ever controlled (balanced) independent steps in May, and his record before we went to Scotland was four steps. He repeatedly smashed that record while he was there, to the point where we stopped counting steps and started just focusing on quality!

This was one of his best. You can see Mike is tapping his hips to remind him which leg to lift next (and which way to transfer his weight - remember these things are not intuitive for Daniel - each move is considered) but he is not supporting him.  Because Daniel still has one side of his body that is weaker than the other, it means is is easier to transfer his weight to one side than the other. This means that unless he focuses, his steps can be of different lengths, because he is less confident to balance on his left leg while stepping with his right foot.  If one leg takes bigger steps than the other then you can't walk in a straight line! This was an attempt where he did manage good, equal steps with both feet. Annoyingly my phone decided its memory was full half way through and quit, so you are only getting about half what Daniel did, but you get the gist...

Along with the independent walking practice, came a bit of falling practice. If Daniel is ever to walk independently within his own home, even across a room, without someone being right behind him, he needs to learn to fall. At the moment he still falls like a log, and would hurt himself a lot, if not caught. He needs to learn to fall more effectively, and put his hands down. This is extremely difficult, because the spasticity in his arms means that the more anxious he is, the more his arms tighten inwards, rather than putting them outwards, for instance when falling. The beginning of getting used to falling was this, which fun as well...

Apart from the approximately four hour round trip to Perth every day, of course we still had time for some relaxation, and quality time with Grandma and Grandpa, during the few days they were with us. The first week the weather was hot, hot , hot (even in Scotland!) and one of the highlights was some water play in the garden one evening.....

...while Grandma and Grandpa did this......(to be fair, it was about the only time they had a chance to sit down while with us!)

So.....what have we been up to since getting home at the start of last week? Well, Lucy spent all of last week indulging her passion for dancing, on her summer school, which was her 'reward' for the amount of time she had to just 'fit in' around Daniel's timetable in Scotland. Meanwhile, Daniel has had around 5 hours with his private physio, plus more physio at home, as ever. His physio Jenny is keen to buid upon all the work from Scotland.

She is also focusing a lot of the need to dissociate his arms from what the rest of his body is doing (so they are not clutched against his chest when walking) and also the weight transference thing. That led to some exercises like this (where he has to transfer his weight from one foot to the other, squashing the air out of the thing he is standing on)....

....AND to Daniel riding a scooter for the first time in his life! This again is about putting his weight through one leg. He was more than a little bit pleased with himself!

He has discovered the delights of David Walliams' books for children (thanks to his friend Ieesha), and so there has been plenty of this going on as well.....

We have also had two appointments with the wheelchair repair service, one hospital appointment, one trip to Bristol for his splints to be adjusted, and various other fascinating activities along that sort of line.

Daniel has again shown some signs of the frustration he experienced last term. This of course is sad to see, but we know it is part of our job (and indeed everyone that works with Daniel) to help him work through this phase, hopefully towards acceptance of his condition and pride in himself. He has also expressed a real desire to be independent. To some degrees this is easier said than done, but the fact that he wants to do it is a big step, and we have stepped up our efforts to work on independence skills at home. More on that in a future post.

Only just over two weeks until school starts again - where on earth are the holidays going?

Wednesday, 23 July 2014

Summer holidays at last.....

Sorry for the long delay between posts. That has been due to the very long slog between half term and the end of the summer term. Daniel has been plodding along, working hard at his physio and his school work, and while there hasn't seemed to be much visible progress, in reality he is slowly but surely, little by little getting stronger.

His private physio set him a '2 week physio challenge', and then awarded him a trophy for that, combined with very hard work on his physio all year. He was thrilled with it!

The grand presentation!
We also had a great visit to Brainwave in June, where Daniel was able to show off all his progress since we were last there last August, and we came home with a new exercise programme, which we mix and match with his other programmes from other professionals. He also came away with a new certificate, for taking 4 independent steps. In fact, the Brainwave certificates are quite a nice way to summarise his progress since his SDR op. We have had.... January 2013 - certificate for walking with a Kaye walker, August 2013 - certificate for walking with quad sticks and June 2014 - certificate for four independent steps!

Since the Brainwave visit, all the professionals working with Daniel have agreed that any walking should be done in his newer taller splints, due to the better alignment they give, and hopefully the improvement to the tibial rotation in his right leg, and hyper-extension in his knees. We will sacrifice the building of the calf muscle for now, in order to have those gains.

A couple of weeks ago Daniel got his new wheelchair, which has been provided on the NHS (admittedly after a little bit of fuss on our part), and for which we are very grateful. It is a zippie Simba chair, which is far lighter than his previous chair, and much easier for him to self-propel. It still needs some tweaking, and possible additions like foot straps, but he is enjoying his increased independence in it (and we are enjoying the fact that it is so much lighter to push / lift).

So... Daniel made it to the end of term, and the end of Year 3 (and Lucy to the end of Year 1). It has been a good year for him. He has relished the move to Key Stage 2, and the more structured academic subjects. He has worked hard at his physio, and has made steady progress. At the same time, over the last six months in particular, Daniel has started to become more aware of his disability than ever before, and has been sad and / or frustrated at times. This is mainly not for reasons you might expect, ie it is not because he can't walk as such. It is more because he feels that he is nagged so much of the time, and because he can't take part in some particular activities, often small or transient ones.  Also because he feels the physio as such a burden (not surprisingly, because it is!) We had been warned that this self-awareness tends to develop around this age in children with physical disabilities. It is hard for us to see, but it is a necessary phase, if Daniel is to move not only towards acceptance of his difficulties, but also an understanding of, and pride in the strengths he has too.

Having broken up from school on Friday the children and I, along with my Mum, made the long journey over the weekend up to Perth, for another two weeks of hard work at MP Fitness (where you will remember we came this time last year, and again last October). Daniel will have two hours a day in the gym for the next two weeks. We had our first two sessions Monday and yesterday, working with Rachel and Steph, and it's been a great start. Lots of hard work on core and legs.....

Yesterday, Steph managed to get him walking with his crutches on his own for the first time. Admittedly it wasn't that pretty, and not massively stable either, but he did it, and now can build from there.

Immediately following that, she took the crutches away, and tried some independent walking, and Daniel SMASHED his previous record several times, on the final attempt actually managing FOURTEEN tiny steps! (Don't you love the way he grips his t-shirt, as if it is going to stop him falling over?)

So, although I said at the start of this post that there hasn't been much 'visible' progress over the last few weeks, while we have slogged away to get to the end of term, in fact today reminded me that the hard work does has an impact. Daniel has clearly been getting stronger and steadier little by little. He is ready for what Mike and team will throw at him over the next two weeks, and is keen to achieve whatever he can. That's not to say there won't be any tears though...............

Sunday, 11 May 2014

Another little sprinkle of magic.....

We have been home three weeks now, and trying to establish our new routine. As expected we are struggling to increase the amount of physio we do at home, but we have shifted the focus of our long weekend home sessions, to concentrate on hip stability and the excercises suggested by the team in St Louis. We also continue to do stretching, standing frame, walking practice etc every day. We would like it to be more, but that's all we can manage right now.

Meanwhile, in school, Daniel continues to have one hour sessions with his private physio on two days each week, and on the other three days, his TAs do a mini session of 15-20 minutes with him. He is wearing long splints for half the day and short for the other half.

One of the main issues that has started to become apparent over the course of this academic year has been that is now becoming too difficult to integrate Daniel into mainstream PE / Games lessons. When he was in the infants, he was able to take part in activities, pushed in his wheelchair by the TA. However, as the other children start to learn 'proper sports', like rugby, hockey etc it is simply too difficult for Daniel to be included, in the true sense of the word. What I mean is that Daniel can be present in the lesson, ie not excluded, but he simply does not have the gross or fine motor skills to be part of the game. He gains very little from the experience - his poor TA does a lot of running around, while having to protect the safety of both Daniel and the other children, and her reward at the end of the session is a very muddy wheelchair, which she then spends twenty minutes brushing off before she or Daniel can re-enter the school building.

Even swimming, which Daniel loves at home, has proved to be frustrating for him when trying to keep up in a 'mainstream' swimming lesson with schoolfriends.

So, we have decided that from September, Daniel will be withdrawn from PE and Games sessions. If possible, his physiotherapy will take place then. If not, we will consider taking him out of school at those times to do exercise more suitable for him.

It is worth pointing out that these issues with inclusion are not due to any lack of effort on the part of the school. In fact, as a result of some of these problems (which came particularly to a head over a lunchtime compulsory Dodgeball activity - a game for which Daniel has neither the strength to throw well enough, nor the ability to move to avoid being hit), one afternoon the Advisory Teaching Service came in and taught Daniel's whole class 'New Age Curling' (sort of curling without the ice!) Not only did Daniel come home saying he had "the most awesome day ever", but it was touching that at the end of the session, when the teacher asked the children if any of them would like to miss dodgeball the next week and try Boccia (which you may remember from the Paralympics) instead, almost the whole class put up their hands!

There are still some physical activities in which Daniel can take part, as long as he has sufficient adult support. This was him at a friend's rock climbing party a couple of weeks ago. It took the support of 2-3 adults at any one time, and he couldn't climb any higher than I could reach to place his feet, but he had a fabulous time!

He also still enjoys riding his trike. Last weekend we went for a lovely ride to the park. The sunny weather meant the ground was mainly dry, but Daniel did manage to find this muddy puddle, which he just sat in for ages and refused to move.

During the home physio session last weekend, we discovered that Daniel's independent standing practice was much better to music. It means he does not 'fix' in an abnormal position, but relaxes and dances, and this dynamic standing is much better for building his stamina and balance. He loves it too....

You will see he is wearing both his tall splints, and his lycra suit, to give better alignment. You can also see how close Rich is, because although Daniel is very steady for ages, if he falls forwards he falls like a log and he doesn't need to lose any more teeth!

And, having done a bit of dancing, Daniel stunned us, by taking his very first controlled INDEPENDENT STEPS!!!!! You may remember he managed some 'falling steps' with Mike Poole, back in the autumn, but here he actually balanced in between. Like this....

AND ..... it wasn't just a one off. There was this.....

And this.....

And this....

 And more! (But I won't bore you by posting each and every one!)

You see what I mean by falling like a log? Lucy learned that where she was lying in that last clip was maybe not the best place!

It's a funny feeling - both Rich and I thought we would never see Daniel take independent steps,  and it was just incredible. It's the times like those which buoy us up and keep us all working at the physio on those days when we just can't face it.

Of course, that's not to say that our physio sessions are all smiles and achievement! Sometimes Daniel just isn't in the zone, for whatever reason, and a lot more nagging, cajoling and even threats are involved, as well as some sessions taking ages because of how much time we waste while he messes around procrastinating!

In other news.....Daniel is in this week's edition of Take a Break magazine. ..

The article claims to have been written by wasn't! A certain amount of artistic licence has been taken, but in essence the story is right, and the money paid to us by the magazine will go towards Daniel's ongoing physiotherapy.

So, three weeks ago today we arrived back from St Louis. It seems like a lot has happened since then. I thought I would finish with this last photo, so ordinary in many ways, but for me my first ever photo of my two children standing up side by side, and unsupported.

Saturday, 19 April 2014

Sad to say goodbye........ again!

So, here we are, packing again tonight and saying goodbye to this special place. None of us want to leave, and it feels much too soon, but at least we feel it has been well worth coming all this way.

We did manage a trip on the paddle steamer the day after our aborted attempt! It gave some magnificent views of the Arch from the Mississippi, and it was interesting to see the collossal scale of the freight they move up and down the river.

Since the men are now thoroughly into the baseball, we went down to the new Ball Park Village at the Cardinals' Stadium. We had lunch, while watching the Cardinals play live on the big screen (they were playing away, so not in the stadium right next door), and the atmosphere was great.


Apart from that,  we have had final trips to the Zoo and the Science Museum, and our last couple of days have flown by.

From the physio point of view, in addition to his walking forwards and backwards on the treadmill, Daniel has also now been walking sideways (which works his abductors hard and is something we need to start doing at home).

He has continued to work lots on core stability. This photo shows him throwing toys into a net while in high kneeling, having to maintain his balance as he throws.

Similarly, work on the ball to build core strength.....

And riding the bike as a reward (although that of course also works his hips at the same time).

We now have our new set of home exercises, which focus particularly on hips and core and we are looking forward to getting our teeth into that when we get home. We were keen that this trip should be a 'reset', since our home physio had become a little unfocused, so we are planning a new weekly routine when we get home. Admittedly it may take us a few days to get that started (indeed even to decide exactly what form it will take!) At least we feel like we know what must be done, and we just need to work out how (or mainly when) we are going to do it!

Daniel's new pair of blue crutches also arrived today (in the nick of time) and are safely packed! It will take him a while to start to use them, little by little, but we will see how he gets on at home.

So, it was with great sadness (and even a couple of tears) that we said good bye to Jackie....

...... and Mad Mike (with Kelsey the student, who worked with Daniel too today).

Lucy also said a very fond farewell to the Siblings' Playroom, especially her favourite member of staff, Pat!

So, goodbye St Louis and thank you once again. Admittedly we leave with one new thing to worry about (the twisting in Daniel's leg), but also with new purpose and determination. We all wish we could stay longer, although I am looking forward to reintroducing vegetables into our diet!

As a final summary,  I thought I would post this photo. This room in our apartment was the place where in those initial weeks after surgery Daniel needed the support of both of us to bear weight and walk the length of the sofa in his walker. Sixteen months on, here he is standing independently in front of that same sofa waving his hands in the air! We need to remember that and continue to focus on the progress when we get home and struggle once again to fit the new exercises into our daily lives!