'Operversary' Number Three!

Yesterday we celebrated the third anniversary of Daniel's SDR operation. It shows how much significance the date has for him that he asked several weeks ago if he could go out for a special meal with his friends on the 15th November. So, that's what we did!

Of course the day started with the obligatory physio. Here's a little clip of Daniel working hard trying to keep his body straight while holding a 1kg medicine ball over his head.

Then out for lunch we went!

 

 

 

Here's a tiny clip of Daniel walking and chatting away coming out of the restaurant. There isn't much because I wasn't moving fast enough to get ahead of him!

 

It was great to celebrate the day, because sometimes we get lost in the hard work, the nagging and the worry. We forget that Daniel has made huge progress in the last three years. He and we continue to work hard towards his big goal of an independent life.

As always, a big thank you to those who have supported us in any way over the last three years (and longer). It continues to mean a lot to us!

Summer holidays are here........

It has been several months since I last updated this blog, not for any reason other than the speed with which the days seem to go past, and I find myself not quite sure where to start...

So, I think I will give you the 'headlines' from the last few months, which may not end up being in chronological order.

1 ) Physio 

Physio continues to be a major fixture of Daniel's life, and always will be. He continues to see his private physio Jenny twice a week in school (or at home in the holidays). He works hard for her, and she does a great job of keeping him motivated.

We still do physio at home at the weekends, although sometimes other activities are getting in the way of our traditional Saturday and Sunday morning physio slots, and Daniel is increasingly resentful of needing to do physio at home. Sometimes on Saturdays, he will just walk on the treadmill for half an hour. This we almost take for granted, forgetting that pre-op Daniel couldn't walk more than about 5 paces along his parallel bars.

We also continue to work on independence, encouraging Daniel to practise getting up into his walker from the floor himself, as well as working on dressing skills. Daniel gets himself dressed into his pyjamas after he has a shower. This takes around 20 minutes, and involves some squawks of frustration, but he he learning to stay calm and to persevere and is slowly improving.

One of the medium-term targets Daniel has set for himself is to toilet himself independently. This is a big target for him, because it involves so many aspects- walking to the toilet, turning around, pulling down his trousers/ underpants with one hand while holding on with the other hand, wiping if needed, pulling up trousers and underpants, transferring to the sink and then handwashing. We have some new equipment in our toilet, supplied by the OT, which is helping him make a start on progressing towards his target. (More about that in the 'equipment' paragraph below).


2.  Equipment

What has changed in terms of equipment since I last wrote? Firstly, Daniel has had a new walker. His beloved American walker had got slightly bent coming back on the plane last Easter. We had been continuing to use it anyway, but then Daniel's physio Jenny got a bit over-enthuastic taking the hip-guard off, which then wouldn't go back on again. So, the NHS physio kindly supplied us with a new shiny red British Kaye walker.  It is slightly frustrating that although the American and the British ones are both made by Kaye, they are different. The British ones are heavier and the hand position is much further back. Daniel found this very hard to adjust to, and I have heard the same problem from several other SDR children.  By a reciprocal arrangement, Kaye USA and Kaye UK will not ship to each other's countries, so the problem could not be solved by simply ordering a new one from the US. Anyway, after some months Daniel is starting to get used to the new walker. He still walks more slowly in it than he did in the US walker, and generally walks shorter distances, but he has stopped moaning at least!

I have talked previously about the difficulty of getting a suitable car seat for Daniel. He needs a 5 point harness, and a reasonable amount of support. We have bought his last two car seats in St Louis, since the Americans make car seats with 5 point harnesses for bigger children. However, Daniel had outgrown the second of those, and we have finally conceded to the inevitable and bought him a 'Carrot' special needs carseat. Not only does this give him lots of support, but it has a rotating base, so the seat can rotate to face out of the car, making it easier to lift him in and out of the car. The downside? The cost of £2200. A non-disabled nine year old would be travelling in a booster seat, costing around £30. A wonderful example of the 'price-tag' attached to physical disabilities.

As mentioned above, we have also had a chunk of input from the OT services, with regard to our home equipment. Daniel has had a new postural chair (used for things like eating, working at the computer, doing homework etc). The chair supports his body so that he can focus on using his hands.We also have a new stair rail up the stairs, so Daniel can walk up the stairs, with support (and always with someone behind him).

Finally, we have the new toilet set-up, which is helping Daniel work towards his independent toileting. It isn't perfect yet, because the frame is not attached to the floor, so if he puts all his weight on one side of it (which he needs to do to turn round) it moves. However, it is pretty good, and Daniel much prefers to use the actual toilet than a commode-type thing (plus it's nicer for us too, as you will imagine!)

3. Splints!

This could have gone in under 'equipment' but actually splints are such a major and ongoing source of confusion that I decided to give them their own paragraph! As you may remember, Daniel was in double layer (tall on top of short) splints for around the first six months after surgery. Then he transferred into just the short 'underneath' ankle splints (DAFOs).  These are much lighter and make moving around on the floor easier. However, by the time we went back to St Louis a year ago, Daniel had developed two nasty habits wearing them - the first was the hyper-extension in his knees (knees flicking back too far when he walks) and the second was some tibial rotation (rotation of the bone) in his right leg, due to failing to bring his right leg through far enough when he walks, meaning he puts his foot down facing outwards. Therefore, on the recommendation of the private orthotist it was decided that Daniel should go back into AFO's (tall knee-high rigid splints). These gave him more support, meaning that he could stand independently in them, and even take a few independent steps. However, they prevented him building strength in his calf muscles and ankles (because they gave him so much support) and they are so rigid they make it impossible for him to crawl or get up off the floor into his walker. He has also started to develop a nasty habit of whacking his heel down hard (with his leg straight) when walking in those, so it's not as if they have solved all his gait problems.

At Easter, we spent two weeks back at MP Fitness in Perth. Mike decided that he would like to work with Daniel in his short splints, in order to build strength again. Jenny, the home physio agreed. This meant that although we had a great, and very productive couple of weeks, there were fewer obvious landmarks of progress to report. It is much harder for Daniel to balance in his short splints, and frustrating for him when he knows he can balance for ages in the tall ones. However, he actually made huge progress, and was consistently balancing for around 20 seconds, by the time we left Scotland showing that he is in fact far stronger than a year ago, when he had moved to the tall splints. Since coming home again he has continued to develop  this, and his record in short splints is now nearly a minute and a half! (Although most attempts are around the 30 second mark).

So, Daniel is now back wearing short splints much of the time. Last week we travelled to Kingston to pick up new hinged short splints, which Daniel seems quite pleased with so far. 

4. Other developments

Although physio will always be a fact of life for Daniel, now we are past the two year post op point, we are keen that Daniel should branch out and enjoy some other activities.

He continues to enjoy his one to one swimming lessons, as well as Riding for the Disabled on Sundays. As mentioned in the last post, on Sundays when he does not have riding, he goes to Cheltenham Saracen's Powerchair Football Club, which he hugely enjoys. He has improved a lot, and of course is getting sneaky power-chair skills training at the same time as playing football.

Daniel has also been desperate to learn a musical instrument, like many of his friends do. This has been tricky, because the vast majority of instruments are simply not possible for him, due to his poor fine motor skills. However, in February he started learning drum kit, with a brilliant teacher who comes to our house. Daniel is loving his lessons, and for his birthday in March we bought him his own shiny new drumkit!

5. School

Daniel still enjoys school and loves to learn. This year he has started to use 'Dragon 'Dictation' software on the computer to record his longer pieces of written work, instead of it being scribed for him by his TAs. There have been some teething difficulties, since it takes a while to  'train' the software ro recognise a voice, and Daniel's speech is not always clear or loud. Plus, in the busy school week, it is tricky to find chunks of time for him to practise. However, it is definitely something we would hope he can make further use of in the future.

6. Looking to the future

As I said above, most of our long term targets revolve around independence for Daniel. However, in the shorter term, one big decision we need to make in the next few months is which secondary school Daniel will attend. Because Daniel has a statement of special needs, we need to make this decision a year earlier than the normal admissions round. We are lucky in that we have a number of good schools locally. It is a matter of which will be best for Daniel and will allow him to thrive in the way he has done at primary school. Rich and I have already looked around a couple of schools, and we shall start showing Daniel all the schools in the autumn, and hopefully make a decision. It's scary to think of Daniel starting secondary school (although we still have two years before he will actually go), but we are lucky in that we have options. I have been shocked to find that in many areas of the country only one secondary in a particular area will be wheelchair-accessible, and all physically disabled children have to attend that school, which may be on the opposite side of the town, will be a school that none of their friends from primary school will go to, and where even their sibling may not be able to attend, because they do not live in the catchment. Fortunately, as I said, round here almost all the secondaries will be accessible (in the main) and we just need to work out where will work best for Daniel.

So, that's it for now. I shall try to add a couple of better pictures later. We have another trip to MP Fitness coming up soon and the new school year is coming up fast as well. I shall resolve not to leave it another 8 months before updating this blog again!!

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.

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!

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?

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...............