tag:blogger.com,1999:blog-53136468002753784932024-03-19T04:06:16.518+00:00Help Daniel Find His FeetDanielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.comBlogger92125tag:blogger.com,1999:blog-5313646800275378493.post-43047334711118650552015-11-16T14:46:00.005+00:002015-11-16T14:46:40.184+00:00'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!<br /><br />
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.<br />
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Then out for lunch we went!<br />
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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
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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.<br />
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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!Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com1tag:blogger.com,1999:blog-5313646800275378493.post-19076315043367146192015-08-14T21:52:00.000+01:002015-08-14T21:52:03.538+01:00Summer 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...<br />
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So, I think I will give you the 'headlines' from the last few months, which may not end up being in chronological order.<br />
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1 ) <b>Physio </b><br />
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<b>Physio </b>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.<br />
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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.<br />
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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.<br />
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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).<br />
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2. <b>Equipment</b><br />
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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!<br />
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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.<br />
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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).<br />
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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!)<br />
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3. <b>Splints!</b><br />
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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.<br />
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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).<br />
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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. <br />
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4. Other developments<br />
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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.<br />
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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.<br />
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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!<br />
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5. School<br />
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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.<br />
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6. Looking to the future<br />
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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.<br />
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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!!<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-7640662428667122582014-11-21T14:41:00.002+00:002014-11-25T13:01:40.639+00:00Two 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!<br />
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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.<br />
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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.<br />
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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'!<br />
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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!<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-29380553383473448572014-10-03T13:11:00.000+01:002014-10-03T13:11:21.091+01:00October 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.<br />
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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. <br />
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Here are a few memories of an action-packed 3 days of activities....<br />
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And my absolute favourite video clip..... here's Daniel on the zip-wire (in the rain), having the time of his life!<br />
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Once we came back from holiday we were quickly back to school - Year 4 for Daniel and Year 2 for Lucy.<br />
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<br />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!)<br />
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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.<br />
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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.<br />
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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! <br />
<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-46903894568703192532014-08-14T09:16:00.001+01:002014-08-15T07:57:09.596+01:00School 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.<br />
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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.<br />
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Some action photos....<br />
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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.<br />
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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!<br />
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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...<br />
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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...<br />
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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.....<br />
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...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!)<br />
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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.<br />
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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)....<br />
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....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!<br />
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He has discovered the delights of David Walliams' books for children (thanks to his friend Ieesha), and so there has been plenty of <i>this</i> going on as well.....<br />
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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.<br />
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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 <i>wants</i> 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.<br />
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Only just over two weeks until school starts again - where on earth are the holidays going?<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-6117088600640220352014-07-23T11:05:00.001+01:002014-07-23T11:05:42.084+01:00Summer 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.<br />
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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!<br />
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<tr><td class="tr-caption" style="text-align: center;">The grand presentation!</td></tr>
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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!<br />
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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.<br />
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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).<br />
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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.<br />
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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.....<br />
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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.<br />
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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?)<br />
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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...............Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-76107180955977652062014-05-11T21:45:00.001+01:002014-05-11T21:51:46.520+01:00 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.<br />
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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.<br />
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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 <i>excluded</i>, 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. <br />
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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. <br />
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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.<br />
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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!<br />
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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!<br />
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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.<br />
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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....<br />
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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!<br />
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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....<br />
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AND ..... it wasn't just a one off. There was this.....<br />
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And this.....<br />
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And this....<br />
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And more! (But I won't bore you by posting each and every one!)<br />
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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!<br />
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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.<br />
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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!<br />
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In other news.....Daniel is in this week's edition of Take a Break magazine. ..<br />
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The article claims to have been written by me......it 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.<br />
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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.<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-28546496850294537152014-04-19T04:13:00.000+01:002014-04-19T05:01:02.972+01:00Sad 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.<br />
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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.<br />
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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.<br />
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Apart from that, we have had final trips to the Zoo and the Science Museum, and our last couple of days have flown by. <br />
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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).<br />
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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.<br />
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Similarly, work on the ball to build core strength.....<br />
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And riding the bike as a reward (although that of course also works his hips at the same time).<br />
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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!<br />
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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.<br />
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So, it was with great sadness (and even a couple of tears) that we said good bye to Jackie....<br />
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...... and Mad Mike (with Kelsey the student, who worked with Daniel too today).<br />
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Lucy also said a very fond farewell to the Siblings' Playroom, especially her favourite member of staff, Pat!<br />
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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!<br />
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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!<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-42887677203144972782014-04-16T04:46:00.000+01:002014-04-16T05:32:04.337+01:00Sixteen months of excellent progress, but mixed emotions.......We have so far had four physio sessions, two each with Jackie and Mad Mike. We have now established that unfortunately Daniel does have some tibial rotation in his right leg (ie warping of the bone below his knee). It is fairly minor at the moment (and is unfortunately an issue for many children with cp due to their abnormal gait) but we need to take action rapidly as it is something that could ultimately require surgery if it continues to get worse and worse. The root cause is the weakness in Daniel's hips. Therefore when he walks, his right leg does not come all the way through and his foot is put down at an angle out to the side; his knee then tries to point forwards and inwards to compensate, and this causes the twist.<br />
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During Friday's sessions, Mad Mike taped Daniel's hamstrings to try to discourage the hyper-extension in his knees (the blue tape you may see in the photos below) and also experimented with 'derotational strapping' on Daniel's right leg, which is designed to discourage the twisting motion I described above.<br />
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However, it's a case of trial and error in seeing whether the strapping works, and you can see in the tiny video clip below a time when it wa<i>s not</i> working, and his leg was still twisting (look at the angle between where his foot is pointing and where his knee is pointing!)<br />
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We also experimented more with the strapping over the weekend, and must admit to being a bit undecided about the way forward with it. At the moment we feel we just need to live with the issue, while working extremely hard at the hip and core strengthening exercises to try to tackle the problem at its root. This gave us quite a miserable weekend because there are times when we want to wince, watching Daniel's foot position as he walks, and it is extremely hard to resign ourselves to the fact that whatever we do Daniel will have some problems with joints etc as he grows older. Don't take this to mean that we have regrets about Daniel's SDR - he would have had significant problems with hips, joints, contractures etc if he had not had SDR. He is undoubtedly better off, even without considering his transformation in mobility. It is just hard to accept that we can't 'fix' everything and he will never have a normal gait, even in his walker, which will have certain impacts over time. We have also realised that we can't just nag Daniel all the time as (a) it doesn't seem to make him walk any better when we do, and (b) it just takes away all the pleasure he gets from walking, and makes him feel like he is failing. However we can, and will work hard at strengthening the relevant muscles to try and improve some of his issues.<br />
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In the physio sessions he has also had a few tries walking with crutches, supported a little, as you can see...<br />
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He has also done some treadmill walking, both forwards.....<br />
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.....and backwards (which is really hard for him, so it had to be on its very slowest setting).<br />
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He has done some lovely standing balancing, for over a minute at a time..<br />
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and also some supported standing on one leg (again this requires him to stabilise his hip).<br />
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Daniel has really enjoyed his physio sessions, and the communication between the physios is so good that each one always manages to pick up where the other left off.<br />
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As when we were here before we have been so impressed with the hospital, the facilities, cleanliness and exceptionally professional and caring approach shown by all the staff. Lucy has been thrilled to return to the siblings' playroom, the free, secure childcare facility for siblings, while Daniel has been in physio. On Thursday they were celebrating National Siblings Day, and made superhero capes and masks, as well as having all sorts of special events and giving each child a goody bag to take home.<br />
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When not at the hospital, we have enjoyed returning to some old favourites, including the Zoo, Science Centre and Arch.<br />
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Also lots of swimming in the hotel pool.<br />
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We have experienced some classic St Louis weather swings, from baking in 26 degrees at the zoo on Saturday, to electric storms on Sunday, and then plummeting temperatures and freezing rain on Monday!<br />
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Rich and both children have become seduced by the baseball, and officially become 'Cards' (fans of the St Louis Cardinals, a major league baseball team). Daniel has purchased and proudly showed off his Cardinals t-shirt and cap....<br />
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.. and here are the three of them watching the baseball on tv while waiting for lunch in a traditional American bar today!<br />
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Oh yes, and Rich managed to get a parking ticket! Admittedly he didn't understand what the signs meant (although perhaps with hindsight the 'P' with a line through it could have been a clue) but ignorance of the law is no excuse, eh? It's now paid though, and we move on, with a fuller understanding of the American Highway Code!<br />
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We were hoping to go on the paddle steamer up the Mississippi today, but the area around the Arch is being hugely redeveloped in preparation for celebrations of it being 50 years since the Arch was built. So this is a very common sight...<br />
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The upshot of this building work was that, in order to avoid a totally wheelchair inaccessible 40 or so steps down from the Arch to the Riverside, we had to walk a <i><b>huge</b></i> (around a mile) detour to gain access to the river. By this time, perhaps unsurprisingly, we had missed the boat, and were all (most particularly me) in a foul mood! We will try again tomorrow or the next day though, since when we were last here for Daniel's op it was winter and the boats weren't running, so it would be a new experience.<br />
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So, all in all, it's been a busy few days, and we have been reminded just how much we like St Louis, on top of the special place it will always have in our hearts. From the physio point of view, we came knowing that we needed the 'reset' and are still hopeful that we will leave with a clearer idea of the way forwards, much as it is causing us some sadness and confusion along the way. Plus of course, it is important not to forget and to celebrate just how much progress Daniel has already made.<br />
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The quote in this photo below (taken in the museum underneath the Arch) is a very famous excerpt from the Declaration of Independence. However, the words also seem very relevant for Daniel, and are important for us not to forget.<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-87380945349036302942014-04-10T05:21:00.002+01:002014-04-17T04:42:35.097+01:00Back to St Louis!Well, here we are back in St Louis, and all very happy to be here, in this place that has been so pivotal in our lives.<br />
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We had a lovely couple of days in New York on the way, with Chris and Diana, having a much needed break before getting down to physio and all things related. We managed to pack in a surprising amount, considering the shocking jetlag that hit us all. Please forgive the slight indulgence of a few photos that are not directly related to Daniel's progress (which is what this blog is meant to be about!)<br />
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On day 1 we did ......Times Square....<br />
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...Top of the Rockefeller Tower, with its fabulous views...<br />
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... and a bit of shopping!<br />
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On Day 2 we separated into two groups. Diana, Lucy and I had a 'ladies day' at American Girl Place on 5th Avenue. This was a truly amazing experience, and truly American! Lucy bought her first (and probably only 'American Girl' doll) and we had a lot of fun taking it to lunch, and to the salon (Yes, you did read that correctly!) Lucy is thrilled to bits with 'Isla', as she has named her.<br />
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Meanwhile Daniel, Chris and Rich did more 'manly' activities, including Central Park and The Museum of Natural History. (If you have ever seen the film 'Night at The Musuem', it's that museum!)<br />
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Yesterday we flew down to St Louis, and received a warm welcome from David the taxi driver, who picked us up from the airport again, and all the staff at the hotel, who even indulged us by giving us the same room as last time! Today we got down to business, firstly with the physio assessment with Barrie. This was a repeat of the full assessment that was done the day before Daniel's SDR operation 16 months ago, and was again filmed, so a direct comparison can be made between his pre-op abilities and where he is now. Since Barrie also did our assessment on that day, back in November 2012, it was great to work with her again today.<br />
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We had a good discussion with her about the splints issue we have at the moment, ie the fact that he hyper-extends at the knee so much in short splints, which will cause damage to his knees. The new tall splints help greatly to reduce Daniel's hyper-extension, and he can stand independently for so much longer in them but they will weaken his calf nuscles, and his private physio does not like them at all. <br />
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The only new concern arising from the assessment, and something that has been niggling away at us for a little while anyway when watching Daniel's foot turn out as he walks, was the possibility that Daniel may have some tibial rotation in his right leg (ie twisting of the bone). This could be a real problem in the long term (requiring major orthopaedic surgery) so if it does exist we need to try and tackle it straightaway. We will be able to find out more in the coming days. <br />
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Later in the day we had our consultation with the man we have come all this way to see, Dr Park, the neurosurgeon who did Daniel's SDR operation. He was very happy indeed with Daniel's progress, at several points saying "That is excellent". He continues to predict that Daniel will ultimately be able to walk with crutches in all enviroments. This will take practice over quite a while, but he would like Daniel to try crutches while here in St Louis to see how he gets on. Daniel said the best moment was Dr Park saying to him "You're doing great".<br />
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After the Dr Park appointment, we retrieved Lucy from the siblings' playroom, where she had been seriously happy to get back to play! We grabbed a late lunch in the hospital cafeteria and then went off to 'Safety Stop', a shop run by the hospital that sells carseats, cycle helmets and other related items for children. We were hoping to buy a carseat for Daniel. This is a great example of the sort of intractable problem that goes hand in hand with having a child with special needs, and is the sort of issue that parents of non-disabled children do not even need to consider. Most children Daniel's age would be sitting on a booster seat, using the normal car seat belt. However, Daniel's trunk and neck are still not strong enough to do this, and he needs a more supportive seat with a 5 point harness. In the UK the only such seats for a child of Daniel's size are the official 'special needs' seats, which cost several thousand pounds, and are huge, to the extent that they will not fit in my car. (The wheelchair adaptation means the rear seats are slightly moved outwards, restricting space in which a car seat can be placed). The problem of Daniel's car seat is sufficiently large that we may even be forced to change my car as a result (sounds ridiculous but it's true). We had found out when we were here in the US last time that 5 point harness seats go to a larger size / age of child here than in the UK and after a rather draining hour or so in the shop we found one which is slightly larger than Daniel's current one at home. Of course we couldn't try it in my car, but think from measurements that it may fit, and it should buy us six months to a year more time before we restart the same problem again. Whatever happens, we can use it here in the hire car (a super beast - see photo below!) and on the plane home. We are grateful for that and for the potential that it may do the job at home for a few months (at an absolute fraction of the cost of a special needs car seat at home).<br />
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<tr><td class="tr-caption" style="text-align: center;">Our lovely 'Dodge Grand Caravan' Hire Car</td></tr>
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Tomorrow we start our physio sessions, every week day until we leave at the end of next week. The agreed aims at the moment are:<br />
- to try crutches and see how he gets on.<br />
- to look at all the areas where Daniel needs to work, and create a new home exercise programme for us to take away (like the original 'pink booklet' we had immediately post op').<br />
- to ask the orthotist here to look at Daniel's short splints, to see if any small additions can be made (eg straps across the back) to try to lesson the hyper-extention in his knees when he walks wearing them.<br />
- to ascertain whether Daniel does or does not have tibial rotation in his right leg, and devise a plan of action with regard to that.<br />
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It is good to be back in St Louis; we need the 'reset' and it has started well. More in a few days....Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-42595035661653074372014-03-31T12:24:00.000+01:002014-03-31T12:24:27.450+01:00Ups and Downs......The last few weeks, since I last updated you have been busy (to say the least) and as I implied in my title, have included both highs and lows! <br />
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Both children have turned another year older, Daniel has had his Year 3 Production at school and last night we had the UK SDR party in Daventry (more about that lower down).<br />
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We have also found time for two trips to the London Orthotics Consultancy in Kingston-upon-Thames, for Daniel to be casted for (in the first trip) and then fitted with (second trip) new splints. This is a full day's round trip each time, but the NHS are unable to provide splints of the quality we received in St Louis, and since splints are so vital to support Daniel's feet correctly when walking, and on the recommendation of other SDR families, we decided to visit this private specialist clinic. In order to help the hyper-extension in Daniel's knees, the orthotist felt it best to put Daniel back into longer (AFO) splints. They are quite a lot heavier and are talking a bit of getting used to in terms of Daniel's walking, but they certainly help his independent standing considerably, and we are hoping that once he gets used to them they will do the same for his walking. After months of hard work, Daniel had reached a point where he could stand for 10 seconds unaided in his short splints. In only his second attempt with the new splints on he stood for a mammoth 2 minutes and 15 seconds!!<br />
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Have a look at this.... (it's the shortened version as we thought you watching Daniel standing for that long might get a bit dull!)<br />
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<a href="http://www.youtube.com/watch?v=Q2SulszqO4U" target="_blank">http://www.youtube.com/watch?v=Q2SulszqO4U</a><br />
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We also ordered a lycra suit from LOC. These suits can help children like Daniel will 'perioperceptive feedback' (telling their brain where bits of their body are in space). It should help his sitting posture and his issue with sticking out his left hip when standing or walking. They have to be precisely fitted to the child so only fit for 6 - 9 months before they need a new one, but again we have heard good things from many people and decided it was worth a try, despite the hefty price tag.<br />
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Here's Daniel wearing his suit. He decided he looked like a super-hero, because he has to wear his pants on the outside of the suit! His super-hero name is ........ '<b><i>Splint -Man</i></b>'!! <br />
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However, in the midst of Daniel gaining in confidence and only two days before his birthday, something that we have worried about happening for many months happened....... he fell. His walker caught on a lip of the outside path while he was walking and he fell forwards. Daniel's CP means that he lacks normal 'saving reactions' so does not put his hands down as he falls. Therefore his face was the first thing to hit the pavement. He split his chin and knocked out two teeth, one of which was an adult top incisor (which had come through less than a year ago). We went to our local A & E department, where we were seen immediately - this may have had something to do with the fact that Daniel was screaming and the blood was pouring! They gave him morphine for the pain and glued his chin, but decided that he needed to be seen by the Maxillofacial team at the bigger Gloucestershire Royal Hospital so we transferred there. The tooth was temporarily and loosely splinted back in place there (with the help of another whack of morphine) in a rather 'bodge job' (the best they could do in an A & E department on a Sunday night) - , but we then had a fairly traumatic couple of hours at the dentist the next day where the tooth was pushed all the way back into its socket, and fixed with a wire splint. to neighbouring teeth. Daniel had to have a course of antibiotics (bearing in mind that a tooth had been picked off the pavement, rinsed in milk, then reinserted in his mouth). The wire splint has to stay on for 4-5 weeks and he has to have a 'soft' (mainly pureed) diet for that time, because he must not bite on that tooth at all. That has been testing my culinary abilities!<br />
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This is what his poor face and teeth looked like a couple of days later....<br />
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Daniel ended up having most of a week off school, as he had some pain for days afterwards, but has been healing up well since. We won't know the long term future of the tooth yet, but it is extremely likely to involve some significant dental work.</div>
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The whole 'pureed' diet thing meant that the poor little chap couldn't have a birthday cake on his birthday - so he had eight candles in a mega ice-cream sundae instead!</div>
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The fall has caused Rich and myself to take a big knock to our confidence in terms of letting Daniel be independent, rather than standing over him all the time, and of course we were devastated that the accident happened in the first place. However, to our great surprise, Daniel himself does not seem to have lost any confidence in his walker and we are still frequently having to ask him to slow down.</div>
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On Saturday we had a lovely evening at the UK SDR party, held in Daventry. This was a brilliant opportunity to meet up with several of the families with whom we were in St Louis a year and a bit ago, as well as many other families with whom we have had contact. The bringing together of so many children who have had the same surgery would be special in any case, but what makes it wonderful is the presence of some of the team from St Louis, including Dr Park and his wife, Mad Mike the physio, with his wife, Deanna Walter (the SDR co-ordinator) and Jackie (who was Daniel's lead physio when we were there). Mike Poole, the personal trainer who we see in Scotland, was also there, as well as Jeremy Marris from The Tree of Hope Children's Charity (you may remember that all money donated on Daniel's Justgiving page is held by the Tree of Hope, who claim gift aid on our behalf and pay hospital and physiotherapy bills directly). It was truly magical to see so many of the people, who in different ways have contributed to getting these children on their feet, all dancing with them.</div>
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Here are a few memories of the evening...</div>
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<tr><td class="tr-caption" style="text-align: center;">Very excited! Face is starting to heal too.....</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Personal Trainer Mike Poole wasn't shouting at Dan on this occasion!</td></tr>
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The children were all gathered together for a big photo at the start (see below for the final version of that in a newspaper today).</div>
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Daniel had a nice chat with Dr Park, and the physios from St Louis, but he was most thrilled to spend some quality time with his SDR 'twin' Brooke, both at the table and on the dance floor!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK2lyROh4ltrOMCeMgIMNohPk3PFxh6l3sSJ1g2LHu3WImjoTUtvuf781xNXkBlhXRNNdIwblS6I0hYot9yXrK-3AoMKqkTVo3NtfGong8z37QwVe5bq6OI5VRjmNpC6EWOUCXVYh909CI/s3200/DAn+and+Brooke.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK2lyROh4ltrOMCeMgIMNohPk3PFxh6l3sSJ1g2LHu3WImjoTUtvuf781xNXkBlhXRNNdIwblS6I0hYot9yXrK-3AoMKqkTVo3NtfGong8z37QwVe5bq6OI5VRjmNpC6EWOUCXVYh909CI/s3200/DAn+and+Brooke.JPG" height="300" width="400" /></a></div>
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In fact, Daniel was keen to dance the night away! One of the greatest pleasures he gets from being in his walker is being able to dance, and he always makes the most of it!</div>
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Lucy was very busy too, especially with Brooke's big sister Nadine!</div>
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Daniel really wanted to dance until Midnight, but both he and Lucy were getting tired and by 10.30 he was like this....</div>
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So...... a good time was had by all! This morning this version of the photo of all the children was published in The Mirror. Can you spot Daniel?</div>
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Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-41031485403024144442014-02-11T12:56:00.002+00:002014-02-11T12:56:29.317+00:00Hard working boy...... and media star!Daniel has been working really hard at his physio in the last few weeks, since Christmas. We have evolved a new routine, which means he sees the private physio two afternoons a week, each session being one hour. Rich or I also do at least an hour of physio with him on a Saturday and Sunday. So he is having four sessions of physio each week. Every morning, as soon as he wakes up he goes into his standing frame for at least half an hour (an hour at weekends). This puts weight through his hips.<br />
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He also has his stretches done every night, and we practise a bit of standing balancing each day. He walks as much as possible, although this is mainly done in school due to the weather being so foul. He has school swimming every Tuesday, and also swims on alternate Fridays, plus riding at RDA on Sundays. Plus, a couple of extra-curricular clubs that are <i>not</i> physio related!<br />
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As we approach half term, Daniel is starting to lose a bit of his energy, but is still trying hard, and a couple of weeks ago his physio Jenny was so pleased with him she thought he deserved a home-made certificate!<br />
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Now we have moved past the initial post-op year and the physio has decreased to a more manageable level (everything's relative!) we have started to turn our attention once more to independence skills. As Daniel grows older, it will be these that will be vital if he is to live an independent life. Every evening Daniel now puts his own pyjama top on, and at weekends he also takes his top off first. (He can't do that on school days because he can't undo the buttons on a school shirt). To give you an idea of how hard Daniel has to work to do this, have a look at <a href="http://www.youtube.com/watch?v=HMmtnbW6ZNs" target="_blank">this video</a>, and imagine how much you think you would feel like doing that after a full day at school / work! <br />
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Meanwhile, a couple of weeks ago, our local paper, The Gloucestershire Echo, gave me a call for an update on Daniel's progress. They were very supportive when we were fundraising and tend to phone me every few months to see how he is doing. I told them about his epic walk to the co-op, and a couple of days later they published this....<br />
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Two days after that, on a Monday morning, I received several texts from family and friends asking if I knew that Daniel was in <i>The Times.</i>.... I didn't! Admittedly, the story had become slightly warped in the re-telling (Daniel seemed to have aged four years over the weekend and the 'going to buy sweets' bit had been added by someone to make the story more interesting) but still, national media was a first for Daniel!<br />
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Half term next week - lots of physio planned, but also some relaxation and fun! <br />
Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-44158228363725216692014-01-02T23:43:00.000+00:002014-01-03T12:30:40.172+00:00Happy New Year!!It appears that I managed to go through the whole of December without posting an update! Apologies for that. The reason was simply that, like for most families with small children, December was manic, with little free time to get ready for Christmas, never mind anything else. We had Lucy's nativity (seriously cute, as they always are), plus last sessions of riding, swimming, Rainbows, ballet etc, each often requiring some sort of special fancy dress / party food / whatever, meaning I was constantly searching for the relevant letter to check requirements before sending the children out of the house to any given activity!<br />
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In the middle of all that, Daniel had his final session of NHS hydrotherapy. We have had a year of weekly (in term time) hydro provided on the NHS, which has been great. However, places are extremely limited, so we have had to make way for other children coming along. By fortuitous timing, Daniel will start swimming with school this term, so that should fill the gap in his exercise schedule created by the loss of hydro. Even hydrotherapy had a 'last session before Christmas' special session, with all the underwater lights on in the hydro pool, images being projected on the wall, and best of all, the Christmas album playing through the speakers! It was a lovely relaxed session, and all the children had a wonderful time. At the end, Daniel was the last in the water, wanting "just one more dive" under, to look at the lights! Here he is with Janet, his NHS physio, after I had got out to go and grab the camera....<br />
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Daniel was quite tearful when getting dressed at the end (although he quickly cheered up at the sight of the sweeties Janet had brought!) However, a little bit of me is pleased to regain the Tuesday evening slot in our week, and it will mean Lucy no longer has to go to after school club then too. <br />
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At the school Christmas Fair, the children also found time to meet Santa, and let him know what was on their Christmas lists.<br />
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So, we made it to the end of term, with the usual exhaustion, but amazingly without total collapse from either child.<br />
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With the exception of hydrotherapy and swimming, Daniel had a rest from physio in the last week of term, so he could enjoy the end of term, and so that we were ready to restart with a vengeance on the first day of the holiday. We have had lots of visitors and busy time spent with family, but have managed to do physio every day apart from Christmas Eve, Christmas Day and New Year's Day - a good effort, we think! In fact, it has taken ALL our willpower, because none of us have felt like physio, at all, especially Daniel. <br />
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He has also had two home visits during the holiday from his private physio, Jenny. One of the main things she is working on with him is awareness of where his body and head are in space. He is doing work in front of a mirror (so he can see when his head is not straight, even if he feels it is).<br />
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And, doing things with his eyes shut..... again, this is so he can <i>feel</i> things in space.<br />
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He is practising asymmetric actions. In this video clip you see him trying to hand something to Jenny with one hand, while taking something from her with the other. It's really hard for him to do different actions with the two sides of his body.<br />
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A nifty bit of equipment called a 'Muz-mo' is used to practise dorsi-flexion and plantar-flexion (moving the foot up and down), which is vital for walking. You can see how it works from the clip.<br />
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Meanwhile, Jenny continues to work on building Daniel's strength.<br />
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Strength building remains a priority for our sessions at home as well, as well as practising standing balancing, which Daniel still finds incredibly difficult in his short splints, with his longest stand record being 4-5 seconds, and most of the time less. It must be remembered though that pre-op he had no standing balance at all, not even for a second, so we practise, practise, practise......<br />
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So, we came to the end of 2013, and moved into 2014, each with our own aspirations and targets (I hesitate to use the word 'resolutions') for the year ahead. Daniel himself has some clear ideas of what he would like to achieve over the next year or two.<br />
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Today he started as he meant to go on, by walking to the local shop for the first time! He set off mid-afternoon, with his Daddy, as usual having to overcome the challenge of the gravel on our drive before he could even start the walk itself. It is a distance of 0.6 miles, and took him around an hour and twenty minutes.<br />
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Nearly there.......<br />
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....and finally arriving just as it went dark!<br />
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It was a brilliant achievement, the longest Daniel has walked in one go, and along uneven pavements etc. At some point this year Daniel is planning to walk to school, which he should be able to manage since it is only a little further. However, it will involve a <i>very</i> early start, so we will wait for the mornings to be a little lighter and warmer.<br />
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Daniel was exhausted afterwards, but seriously pleased with himself. Here's what he had to say....<br />
<i>(This also gives you a good indication of what happens to his sitting when he is really tired - he reverts to sitting mainly on his right buttock and tipping his head to the left to balance.) </i><br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-25139434936333494072013-11-28T20:23:00.000+00:002013-11-29T10:23:09.703+00:00Hip, Hip Hooray!!OK.... it's a really naff title I know, but this week we had some good news with regards to Daniel's hips!<br />
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On Monday we had our appointment at the Joint Orthopaedic Clinic, basically a hospital appointment with the orthopaedic surgeon, paediatrician and a physiotherapist all at once. The main purpose was to review Daniel's latest hip x-ray. Daniel has had regular hip x-rays (every 6 - 12 months) since he was two years old, because children with CP are at high risk of dislocated hips. The reason for that is a combination of the spasticity (tightness) in their adductor (inner thigh) muscles, constantly pulling the head of the femur outwards, and the lack of normal weight-bearing, which means their hip sockets stay very shallow. Once a hip reaches about 45% subluxed it is impossible to bring it back in without major hip surgery, where the pelvis is 'carved out' and the hip pinned in place, and that is of course something we very much would like to avoid!<br />
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Just so you can see what I am talking about, the image below shows an x-ray of an almost dislocated hip in a 5 year old child with cerebral palsy. <b><i>NOTE - this is not Daniel's x-ray, just an example!</i></b> <br />
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Daniel's last x-ray, done in May, showed that his left hip had reached 29% migrated, and we were concerned that although the SDR operation had removed the spasticity, and therefore stopped the pull from his adductors, it had also loosened all the muscles, including the ones holding the hip in place, thereby making the situation temporarily worse. Over the last six months we have worked hard at building strength in those muscles surrounding the hips, as well as monitoring Daniel's sitting and lying positions, to ensure the head of the femur is always encouraged inwards, and not out. Of course, since he is walking lots in his walker, he is also weight-bearing far more of the time than previously, which helps considerably. We were hoping to slow down or halt the migration before it went much further, but we were not sure how realistic a hope that was.<br />
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So... we had the next x-ray done in half term and had been anxiously waiting for this clinic to find out the results, which were better than we had even hoped for! Daniel's left hip has started to come back in again, and is now only 19% subluxed - a huge improvement! His right hip is also fine, at only 10% migrated! All in all, really brilliant news! In addition, since Daniel is weight-bearing so much more now, and building strength, the orthoapaedic surgeon predicted that Daniel's hips might now continue to behave themselves, and hopefully will not require intervention. That's an absolutely massive relief.<br />
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The team were also very happy with Daniel's progress since the op, <i>and</i> his weight gain (although since Rich and I still have to lift Daniel several times a day then we could have told them he was heavier!) All in all, it was an unusually enjoyable hospital appointment!<br />
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Of course, as soon as you stop worrying about one thing (for now at least), something else just moves to the top of your 'worry list'. Now we are worrying about the hyper-extension in Daniel's knees when he walks! But I will save that for a discussion another day....<br />
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In other news, last week we had a really productive joint visit of Daniel's private and NHS physios, Jenny and Janet. They were trying him with a therasuit, which is a suit (which Daniel would wear under his clothes) to give support and 'proprioceptive feedback', indicating where bits of his body should be in space. The idea would be to help him walk with his hips straighter, since he still tends to leave his right hip behind and rotate as he walks. The results were a bit inconclusive at this point, so they and we are still considering what is best to do, but it was so useful to have the two physios together and to discuss several other little things at the same time.<br />
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Here he is, trying on the therasuit (it's flesh-coloured, so you have to look carefully!)<br />
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And then (with his clothes over the suit) seeing how it affected his walking with his sticks....<br />
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And finally..... I thought you might like to see Daniel's new super-cool registration plate! (Shipped over from the US, with thanks to Grandma, Grandpa, Chris and Diana!)<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-14737076239610507382013-11-15T09:33:00.001+00:002013-11-15T09:33:42.933+00:00One year ago.......This day, one year ago, we put Daniel into the hands of Dr Park. We hoped and prayed we were doing the right thing and it would give Daniel a brighter, more comfortable and more independent future. The few days that followed were traumatic for us all, and the twelve months that followed that could be aptly described by the words 'roller coaster'! It has been harder work than we ever imagined (and we knew it would be hard work!) However, there can be no doubt that Daniel has made huge progress and today is a good chance to look back and celebrate that, forgetting the things that worry us on a daily basis.<br />
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We are incredibly grateful for the huge number of people who have supported Daniel, and us as a family. From those (some of whom were strangers) who threw themselves into our fundraising, the fabulous team in St Louis, our physiotherapists here in Cheltenham (both private and NHS), Mike Poole and his team in Scotland, Daniel's wonderful teaching assistants who enable him to succeed every day at school, and finally our families and close friends (some of whom we met in St Louis) who have provided a wealth of practical and emotional support.<br />
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At the centre of all that is one special little boy, who is just bursting with enthusiasm for life. Happy first SDR anniversary to Daniel, and to his friends Brooke and Glen. <br />
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This <a href="http://www.helpdanielfindhisfeet.com/progress.html" target="_blank">link</a> is to our new video, which celebrates the progress Daniel has made so far. (Press play then double click to make it full screen). Enjoy!Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-32568304143889157842013-10-29T21:45:00.000+00:002013-10-29T21:53:58.924+00:00Back to Perth......Last week we made the long journey back up to Scotland, for another week of intensive strength training at MP Fitness, near Perth. Daniel was booked in for seven days on the trot of two hours a day in the gym. We were quite worried before we went as to how well Daniel would cope, considering he has struggled so much with illness this term, right up to the week before we set off. However our little champ showed he was up to the challenge once again, and worked really hard. (In fact the person that was ill all week turned out to be Rich, which is always depressing when you have taken holiday from work). We were encouraged that despite all the set backs in recent weeks, Mike could still see improvements in Daniel's strength since we were there in the summer, and Daniel then managed to build further on that during the week.<br />
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So...... LOTS of hard work in the gym took place.<br />
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As we found back in the summer, it was tough for him at times, and he was pushed to his limits, with tears on a few occasions (though always brief). Daniel tried his absolute best and the only low point was Thursday's session, when Daniel was on the early slot (7-9am). Since we were staying a twenty minute drive away from the gym, a very early start was required to get him up, dressed, breakfasted etc and drive to the gym by 7am. Perhaps unsurprisingly he was not at his best that morning and Mike (unusually) took pity on him and gave him a gentler session. Here's Daniel arriving at the gym in the dark and the cold......<br />
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In terms of progress, as you might hope after spending 14 hours in the gym in one week, Daniel built a bit more strength. He also worked a lot on standing balancing, which he still finds extremely difficult with only his short splints for support. The reasons for that are probably a combination of weakness around his middle (which is of course stronger than it was, but still weak in the scheme of things), plus innate balance problems in his brain linked to his disability, plus possibly a vision issue relating to balance. We just have to practise, practise, practise. However, he can now manage a few seconds, like this......<br />
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And with that small amount of balance, Mike started teaching him to take independent steps. This is incredibly hard for Daniel, with what must feel like a million things to think about, and Mike made him repeat the exercise over fifty times, to try to "build the pathways in the brain"!<br />
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What was Lucy up to all this time? The answer is a mixture of time spent in the gym watching Daniel's sessions, schoolwork (since both children should have been at school last week), and trips to the playground.........<br />
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..... Not forgetting her absolute favourite activity of the week, which was feeding the goats on the site where we were staying. She would happily have fed them most of the food we had in the cupboard!<br />
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Daniel enjoyed the goats too, although he was a little less confident than Luce. Here he is conquering his fear, and rather pleased with himself.....<br />
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We managed a bit of quality time as a family too, and a couple of tourist activities (I must admit that it is a fortunate bonus that MP Fitness is situated in beautiful Perthshire, with plenty to do nearby). </div>
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We did some castle visiting, and Daniel, whose current obsession is the Vikings, treated himself to a viking helmet, which he absolutely loves.</div>
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We also went to the Caithness Paperweight factory, watched some paperweights being made and did some glass painting.</div>
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.......and had the occasional pub lunch! For anyone going up to Mike Poole. we would definitely recommend The Wheel Inn, just down the road from MP Fitness. Delicious pub food and the children loved the booths with the tv screens. We had Monsters Inc. showing while we ate - it ended up being a VERY long lunch!</div>
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On our last day, Daniel (and indeed all of us) had an extra treat. Daniel's 'SDR twin' Brooke, who you may remember had both her operations on the same day as Daniel, had just arrived in Scotland ready to start her intensive week of work with Mike the next day. Daniel was thrilled to see her, and Lucy slipped back into playing with Brooke's sisters Neve and Nadine as if they had never been apart! All in all it was a lovely relaxing afternoon, much enjoyed by all.</div>
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Yesterday we made the long drive home, and were relieved to find that the big storm had managed to miss Cheltenham. The week away was definitely worth the many hours in the car, and we again feel we have inched forward another little bit. This morning we started our new exercise programme from Mike, and Daniel started to catch up on his missed school work. Business as usual!</div>
Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-82624215752439256902013-10-13T21:14:00.000+01:002013-10-13T21:14:17.772+01:00Autumn arrives again...... and nearly a year has gone by!Daniel is quite fond of the phrase '<i>There's good news and there's bad news</i>' and he always prefers to hear the bad news first, so I will adopt that model in this update.<br />
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The bad news is that Daniel has continued to be poorly, with one thing after another, for several weeks now. In fact, by my calculations, he has not yet managed a full week at school this term. This has been frustrating for everyone, with not only school time but also huge amounts of physio time missed. He has lost muscle tone and at times struggled even to sit up straight. Times like this remind us how hard Daniel has to work at all things physical, because as soon as he is unwell he just can't do it.<br />
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However, since I had a big moan in my last blog post, I shall avoid that here, and move straight on to the good news, or in other words, the high points of the last few weeks.<br />
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In mid-September, Sunday riding started again. Cotswold RDA is based at Cheltenham Racecourse, which is not only surrounded by lovely countryside, but also feels like a rather special place to ride......<br />
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Every Saturday morning, Rich and Daniel work through a long (often 2 hour) physio session together. Some of the recent sessions have been rather a write-off, due to Daniel being too tired, or too poorly. However, a couple of weeks ago, in a tremendous session, he showed us that he is still making progress, by achieving something he has been working towards for years (literally!) He climbed on to the physio bench independently! First he did it by his own method, and then astonished us by going on to do it the 'proper' way, going through a half high kneel position. If he can become confident at this it will allow him to climb up off the floor into a chair, or his wheelchair, so it is an immensely important functional skill. It's hard work, and since the next illness kicked in Daniel has only managed to reproduce it once or twice, but the fact that he has shown he can do it means that with practice he will eventually do it with confidence. Here's the video (with apologies for the self-indulgent Star Wars reference!)<br />
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So, we are now in mid-October, and Daniel is almost 11 months post op. Some of the families we met in St Louis are coming up to their 1 year post op point this week, and yesterday we met with Sophia and George to celebrate their first anniversary! It was lovely to catch up with the families, and let the children spend time together, as well as raising a toast to all they have achieved in the last year.<br />
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Daniel was on his feet for hours, and all the children had fun playing and dancing. In fact, between them they had some pretty groovy moves going....<br />
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It should never be underestimated how much of a boost Daniel receives to his self esteem from spending time with other children who have CP, have undergone SDR, and go through the same gruelling physio schedule as he does. Despite the fact that he has been ill all week, he was on great form and had a wonderful time.<br />
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From our perspective, seeing these three children dancing together, and remembering that a year ago none of them could walk, was a powerful reminder of just how far they have all come, and what special little people they are. Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-1522990738236026152013-09-15T20:07:00.002+01:002013-09-20T13:08:39.821+01:00Back to School.......Apologies for the long gap since the last update, which is a result of a very busy summer holiday, followed by a manic start to the autumn term. In fact, it would be fair to say that at the moment things are tough, and with no let-up in sight.<br />
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So, what's been going on since I last updated?<br />
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After returning from the intensive course in Scotland we had around a week and a half at home to get going on Daniel's new strengthening programme from Mike Poole. The exercises focus on his core one day, then legs the next, then back to core and so on. Any new set of exercises takes time to get used to, and these were no exception, but at least we got them up and running and were quite pleased with ourselves. We also did some 'ebaying' and bought a total gym (leg press machine), so now our living room really is half-lounge, half-gym - with a treadmill, total-gym, parallel bars, a physio roll and three exercise balls all not very successfully hidden behind the sofa! <br />
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In mid-August we returned to Brainwave, for Daniel's reassessment there. We continue to find these trips extremely valuable because Dawn, Daniel's physio there, only sees him every few months, so she is able to be very objective about progress, as well as any new issues. Our last visit there was actually in January, only a few weeks after our return from St Louis, so although Dawn had seen Daniel's 'post-SDR' legs, there was a considerable amount of progress to show her since then! We were also able to discuss our ongoing concerns about the migration of Daniel's left hip, and get some some ideas on more things we can attempt to prevent it continuing to move towards dislocation, including manipulating sitting positions, the way in which he lies in bed etc, to ensure that at every possible opportunity we are encouraging the head of the femur inwards, not out.<br />
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Daniel was able to show off his quad-stick walking, for which he received a certificate, and as always ended the day with a terrific session in the hydrotherapy pool, where he would happily dive for hoops on the bottom of the pool all day! (He needs someone to push him down, but can then more or less kick back up again himself). <br />
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So, after a successful day, and with another new exercise programme (which we need to somehow blend with our programmes from Mike Poole, as well as from our home physio), we set off for some quality time with Grandma M and then on to Devon for a holiday and Daniel's much anticipated 'physio break'.<br />
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We had made a deal with Daniel that he would have to do no physio at all while in Devon. That said, stretches are exempt from any such deal, because missing those will mean that Daniel's legs and arms stiffen very quickly. And of course we were not going to miss out on any opportunity to practise Daniel's walking, in both his walker and his sticks, especially when our holiday apartment had a wonderful long corridor that was absolutely perfect if you happened to be a seven year old boy learning to walk with sticks!<br />
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Here's Daniel on his way to the beach, looking cool! He would walk the length of the corridor with his sticks, and we would then pop him in the buggy to take him to the beach. He would immediately ask to have his splints and shoes removed because they 'ruined his look' apparently!<br />
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Once on the beach, Daniel spent a lot of time happily digging.....<br />
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Interestingly (and slightly depressingly) although Daniel's mobility has of course been transformed since the last time we went on holiday a year ago, that doesn't count for much on the beach. He needs to use the buggy to get on and off the beach, (and pushing it up off the beach is fairly muscle-building for whichever adult - usually Rich I must admit - gets that job!) Once there he is able to sit and dig, (but not move around) and fortunately he is very happy with that for now.<br />
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However, the one big new beach experience this year was both children doing some body-boarding. Lucy, who has never before had much water-confidence, just took off and was able to do it independently, choosing her wave, throwing herself on her board, and on her way.....<br />
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Daniel, of course, was not going to do that by himself, but he had one big advantage - he has no fear of the water whatsoever! It was another back-breaking mission for Rich, who had to stagger down to the sea carrying both Dan and the surfboard, but once in there, if Dan was laid on the board, once the wave came, he could be given a shove and off he went! An adult was required to retrieve him rather rapidly once he stopped, since once or twice he just rolled off under the water. It was another new experience for him though, and we were both thrilled that he had the confidence to try it, as well as the ability to hold on, which he probably would not have done in the past.<br />
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Daniel's ability to use sticks a little bit and to bear his weight better also opened up one other seaside opportunity - crazy golf! The crazy golf course was definitely not wheelchair accessible and would not have been walker-accessible either. However, with a combination of stick-walking, and one of us bearing his weight and helping him take a shot, we managed a round, and both children enjoyed it.<br />
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We also couldn't resist the occasional photo like the one below (although don't assume that Dan was taking a walk along the cliff - it was another job for the buggy, apart from photo opportunities like this one....)<br />
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So, it was a busy six weeks while the children were off school, but a relief for all of us to have a break from the physio while in Devon, plus a chance for Lucy to have a fair share of the attention for once.<br />
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We are now two weeks into the autumn term and things have got a lot more difficult since school was re-introduced back into the mix! Daniel has started Year 3, and Lucy Year 1. Both are delighted with their new classes and teachers, but we are once again facing the 'not enough hours in the day' problem, and it's getting us all down.<br />
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Certain new logistical difficulties have also arisen. For instance, the position of Daniel's new classroom means that most pupils enter by a set of steps. The wheelchair / walker entrance is by a different door, so new routines have had to be evolved for the start and finish of the day, as well as break times. The move to Key Stage 2, and the new subjects involved, have presented new problems for Daniel's TA's to overcome, in order to allow him to access the full curriculum. However, Daniel himself continues to humble us with the enthusiasm he shows for all aspects of school life. To hear him coming home enthusing about learning netball, and the recorder, both of which present him with considerable physical challenges, is quite moving.<br />
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Daniel's week currently consists of:<br />
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- Full time mainstream school, like any other seven year old, but bear in mind every physical movement is much harder for him than another child. For instance 'walking to assembly' would be simply a way of transferring from one place to another for most children, for Daniel it is a physio activity. Writing is extremely difficult and tiring for him, so he manages what he can and then much of his work is scribed for him. Reading is also more tiring for him because his eyes get fatigued.<br />
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- Homework - this has ramped up a bit now he is in Year 3, not to an unreasonable degree, but enough to put pressure on a child who already has no free time.<br />
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- Private physio seeing him twice a week in school time. It is much better having it in school, but still takes him out of class, meaning he has to catch up when he gets back.<br />
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- Daniel's teaching assistants also try to fit in a 15 min burst of physio whenever possible, working on exercises set by the private physio. <br />
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- Hydrotherapy - provided by the NHS after school one day a week.<br />
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- A long (often two hours) session of physio on a Saturday morning, with either Rich or myself.<br />
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- Stretches - done every day.<br />
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- Standing frame time - we aim for 30 mins a day. To put weight through his hip and try to minimise the displacement out of the hip socket.<br />
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- Swimming - this is fun but also physio.<br />
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- Horseriding - also fun but exhausting because it works his weak core so hard. <br />
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- Practising stick walking whenever possible at home (this makes even going to the toilet or to the table for tea a major activity).<br />
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- knee immobiliser worn overnight to hold his leg straight. He puts up with this discomfort with no fuss at all.<br />
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-Constant <strike>nagging</strike> monitoring of his sitting position to avoid the left hip sticking out and the postural curvature of his spine.<br />
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- Inserting practice of any relevant skills as often as possible, eg. making Daniel try to stand and balance for a couple of seconds every time he gets off the toilet, making him climb on to the bench (with assistance) when he wants to sit and watch tv etc..... <br />
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- French Club, which is the <i>only </i>extra-curricular activity in his week that he himself chooses and is not physio-related. <br />
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We would be just about coping with all of the above (plus Lucy's activities of course) until we try to factor in the daily dose of the strengthening exercises, from Mike Poole. We were initially trying to do these before school in the mornings, which meant Daniel's morning went like this.....<br />
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6.45am - Awoken by us (and not happy about it in general).<br />
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7 am - Mike Poole exercise programme (in his pyjamas)....<br />
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7.30am - brief rest and getting dressed.<br />
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7.45 am - breakfast <br />
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8.15 am -leave for school, in order to arrive 15 mins early so he can practise walking with his sticks down the corridor. At the moment the sticks are not yet risk-assessed and cleared for use in school unless I am supervising and taking responsibility for him, so we have to squeeze in that walk first thing in the morning, and he then uses his walker for the rest of the school day.<br />
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However, the major obstacle to that plan is that Daniel is exhausted, and although he goes to bed earlier than most of his classmates, he is still struggling to wake up in the mornings. Added to that he has now come down with a very heavy cold. Therefore, we have not had enough time to do the before-school dose of physio at all this week. This leaves us with the constant feeling that we are failing, because we know how important the strengthening exercises are. We also have a set of exercises from the Occupational Therapist (to help Daniel's fine motor skills etc) which are not even getting a look in at the moment. And the Brainwave exercises. Oh yes, and the feeling that we should be working on Daniel learning to dress himself / toilet himself / use a knife and fork together / a long list of skills that we all take for granted but he will need to master one by one if he is going to live an independent life in the long term.<br />
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And, of course, none of that takes into account that we have <i>two </i>children. Lucy has her own needs, her own talents, and her own set of activities, almost of which have to be crammed into the weekend (because anything she does after school on weekdays involves me having to lift Daniel in and out of the car twice to drop her off, then again in and out of the car another two times to pick her up, which is exhausting for both him and me).<br />
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I decided to indulge myself in that little rant because the temptation is only to post the 'highs' - when Daniel does something new, or we have tackled a new activity. However, if this blog is to be a true reflection of our journey, then it needs to reflect the 'lows' too, and perhaps more importantly, the fact that most of the time it is just hard slog, for Daniel himself, for us, and for Lucy, who so often just has to 'fit in'. There is no doubt that Daniel is doing brilliantly, and we are keeping our 'eyes on the prize', ie the promise of much improved comfort, mobility and independence for Daniel as he grows, but right now it is hard, hard, hard.<br />
<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-60685969131489929572013-08-02T22:13:00.000+01:002013-08-08T12:34:23.824+01:00MP 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!<br />
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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.<br />
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Here are some clips and photos of this week's hard work..... <br />
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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). <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-6eI4DqPr4PvcyxwyI3oovAXyeugBhgxa2zgKWvq3XY5StLhN8sWyNF4_LwUX_0pw5FXnoTIJ6Yfa9Zt-u7EY4P97yXdSns7w5onAfRUCyan3Lrv1ncrThSV_Wnwnkb-D8R7FgQpettMg/s1600/D+and+B+in+gym.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-6eI4DqPr4PvcyxwyI3oovAXyeugBhgxa2zgKWvq3XY5StLhN8sWyNF4_LwUX_0pw5FXnoTIJ6Yfa9Zt-u7EY4P97yXdSns7w5onAfRUCyan3Lrv1ncrThSV_Wnwnkb-D8R7FgQpettMg/s400/D+and+B+in+gym.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daniel and Brooke both slogging away in the gym</td></tr>
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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.<br />
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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!<br />
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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!<br />
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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.<br />
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The other major breakthrough is shown is this clip below - Daniel's first EVER two independent steps! <br />
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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 <i><b>another</b></i> 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.Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-88997968587825952672013-07-28T22:52:00.001+01:002013-08-08T12:34:52.636+01:00MP 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!<br />
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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.....<br />
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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!<br />
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Daniel's hard work has included-<br />
<ul>
<li>Some asymmetric work - very difficult for Daniel to have the two sides of his body doing different things, especially at speed.</li>
</ul>
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<ul>
<li>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!</li>
</ul>
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<ul>
<li> 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. </li>
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<ul>
<li> 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. </li>
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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!<br />
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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!<br />
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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.<br />
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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.<br />
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Tomorrow we start week 2. Bring it on!<br />
<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-43468899294324759542013-07-23T20:14:00.001+01:002013-07-23T20:14:51.620+01:00Summer 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.<br />
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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). <br />
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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!<br />
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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!</div>
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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!</div>
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Tomorrow Dan will have his first 'full on' two hour session, but right now he is looking forward to it. Long may that continue......</div>
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-5557500607793723382013-07-01T13:03:00.000+01:002013-07-17T13:58:47.615+01:00Three 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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....<br />
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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...<br />
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....before we decided <i>that</i> wasn't going to work, and had to resort to two of us pulling him backwards across the field in his wheelchair!<br />
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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!<br />
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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 "<i><b>We are both very impressed with his walking, he has made huge progress</b></i>!" 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.<br />
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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....<br />
<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-21012449128772889032013-06-04T10:40:00.003+01:002013-06-04T11:15:01.261+01:00Sporty 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!<br />
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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. <i>(Thank you to the parents of the other children shown who have given their permission for me to use the clip)</i>.<br />
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<tr><td class="tr-caption" style="text-align: center;">Carrying the hoop in the relay</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Dream Team - Dan with his two fabulous teaching assistants</td></tr>
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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......<br />
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He and Lucy share a private swimming lesson, but while Daniel loves being in the water, Lucy generally prefers to do this.....<br />
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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!<br />
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There has also been some football in the garden action.......<br />
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Plenty of hard work in physio is still going on in the background too.....<br />
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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!<br />
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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! <br />
<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-43058373227799498232013-05-15T14:47:00.000+01:002013-05-15T14:47:29.182+01:00Six 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.<br />
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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.................<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0tag:blogger.com,1999:blog-5313646800275378493.post-70256046751600369722013-05-06T21:23:00.000+01:002013-05-06T21:36:54.265+01:00Two 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. <br />
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However, much as that was frustrating, progress has certainly not stalled altogether and Daniel continues to inch forwards.<br />
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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.<br />
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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........<br />
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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.<br />
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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. <br />
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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.<br />
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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!<br />
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<br />Danielhttp://www.blogger.com/profile/10055975005218041384noreply@blogger.com0