Friday, 14 August 2015

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!!

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