Happy Easter!

Happy Easter everyone, hope you are enjoying the spring sunshine. And chocolate…

Since I last wrote, Daniel has been working as hard as ever, and is getting more independent day by day. It’s wonderful to see how his attitude and ambition has changed along with his physical abilities. You might like to see this photo of him & little brother teaming up yesterday to escape our back garden!IMG_20150405_113024773_HDR

Simon and I are still getting used to ‘losing’ Daniel, as he always used to stay where we put him. He’ll now just take himself off to find the bookshelf, or to relax in the garden, or indeed to the bathroom tap to have a drink of water. I can’t tell who is more delighted – Daniel or ourselves!

IMG_20150207_120107797

It’s not just his escapology that has improved, Dan is now able to swim 100m in the big swimming pool without help (although an adult is always poised nearby, as it wouldn’t take much to panic and drown him!).

Last week he did a standardised physio ‘gross motor function’ assessment, and even I could see the vast progress that he has made.  We are booked into some strengthening programmes to make the most of his developing muscles, and  I can’t wait to see what those sessions will bring.

IMG_20150307_155652886_HDR

Last week Daniel developed a new way of getting himself upstairs unsupervised (you can see a short video clip later in this post). This is amazing in itself and is a huge step towards independence  - although ironically, it did come on the day when we exchanged contracts to move house to a place where we can build him a downstairs bedroom & bathroom!

Better yet, the fact that Dan worked this new technique out for himself shows that he is learning how to plan movements and to put together his new abilities to get him where he wants to go – a huge change from one year ago when he would sit passively waiting for an adult to help him.

When he got to the top of the stairs, Dan was (rightly) full of pride at his achievement. He turned to me, and asked to write a blog post to tell you how grateful he is to have had the operation. So that’s what we did. We made a video to show his ‘new technique’ of climbing the stairs, and  he sat at the computer to write to you all.

The text that follows is all Daniel’s own words, and is his way of expressing how life has changed for him. Enjoy!

I do not want to make a great deal of the new update blog, but I knew you were all waiting for a brand new blog to appear on this website, I just wanted to say:

A massive thank you to you all. Thank You for helping me to do my operation! I have made amazing improvements, and by the help of you things could get very saved!

I have been making loads of improvements. Before writing this blog, I came up with my own technic for climbing upstairs. (see video of one step of my own technic alongside the final line of this paragraph). MVI_3491

Thanks to everyone that has helped in the One Big Step For Daniel Fundraise (and the physios that had helped me in my physio lessons). All of those small differences got put together to make a massive difference to my life.

CONGRATULATIONS TO EVERYONE THAT HAS HELPED, YOU MADE A BIG DIFFERENCE IN MY LIFE, GOODNESS KNOWS WHAT I’LL BE ABLE TO DO IN THE FUTURE WITH YOUR HELP!!!

THANK YOU EVERYONE!

XXXXX

xxx

Posted in Uncategorized | Comments Off

A weekend of fun!

After three weeks of intense activity at Footsteps, this weekend gave Daniel a chance to kick back and enjoy a bit of free time. It was also a great chance for us to see how things have changed. I thought you might like to see what he has been up to.

On Saturday Dan was invited to a friend’s party held at the “Rock Box”, a kid-friendly climbingclimber 2015-01-24 16.24.30wall at the local leisure centre. We didn’t know whether it would be manageable or a complete disaster, but it turned out to be great fun, as these pictures show. Daniel didn’t only make it all the way to the top of the wall, he had a fantastic time doing so! Great physio, the best stretches ever, a rare chance at an  adrenaline boost, and he had a huge grin the whole way through!

On Sunday we took the boys to our local play area. This is normally the perfect place for Dan to ride his trike but this time, we thought we’d try the walking frame. Not only did Dan walk all the way up the road, he then spent a good 45 minutes walking around the tennis courts, learned to dribble a football (ish!), and even walked home too.

We were flabbergasted at his stamina, and how well he did. I managed to take a couple of video clips, and these links should let you share the joy! (video clip one and video clip two)

It was so lovely to see him enjoying the fruits of his labours. It’s important for him too, as he can see that all the hard work is starting to pay off. Now it’s back to school and normal life can resume for a while!

Posted in Uncategorized | Comments Off

Happy New Year – and Dan starts his January in the Gym!

Happy New Year everyone! And my personal new year’s resolution? To find time to write a more blog entries over the upcoming months. I don’t know where the time goes!

At the moment however, our time is definitely going to a good cause. We have started January with a three-week intensive physiotherapy course at the Footsteps centre  (http://footstepscentre.com/). This is an amazing place in rural Oxfordshire which is essentially a boot-camp for disabled kids. They have a team of incredibly tough & efficient physiotherapists, mainly eastern European, who put the children through their paces for two hours a day.

The centre is unique in that it has the ‘Spider’ equipment – a IMG_20150113_150532002web of bungee cords that holds the child in the correct position while they bear their own weight and then exercise in a nice symmetrical position, free from the worry of falling over! Dan describes the Spider as “weird and wired, but I like it!”. You can see pictures of Daniel doing tasks in the Spider, kneeling up (a position that he couldn’t bear prior to the SDR operation) and he does half-kneeling, standing and walking exercises in it too.

Daniel has just finished week two of the three-week course. Each day involves a morning in school, then I collect him at midday and we have a 90 minute drive around the M25 and M40 while Daniel eats a packed lunch in the back of the car. The session runs 1:30-3:30 then it’s back home for tea at 5pm, if we are lucky! We are all exhausted, from the driving, the organisation, and of course from the intense physiotherapy but after just two weeks we can already see improvements, so it is all very worthwhile!

IMG_20150113_152205693Yesterday (Friday 16th January) Daniel took his first seven steps using only his quad sticks for support. The physio was near him for safety but didn’t touch him or the sticks at all. This is a HUGE milestone, as previously he’d only managed one or two steps before toppling over. Sadly I wasn’t nearby with my camera to record the magic moment, but I’ll see if I can photograph him next week.

As well as the ‘Spider” therapy, the centre uses Kinesio tape to support the children’s muscles. Dan has been covered in bright strips of plaster (pictured) for a fortnight, IMG_20150117_103936402 which has amused everyone in our family, and more importantly, is helping his posture hugely.

In other news, do you remember my last blog post mentioning that we were looking for a private physio who had experience with kids after the SDR operation? We had little hope of finding someone, but a lovely lady who reads the blog got in touch and it turns out that her sister may be just the person we are looking for! You never know what amazing coincidences are possible, until such things happen. We look forward to starting work with Pam soon.

Of course this time of year is full of Christmas fun for everyone, and it hasn’t all been hard work for Dan & his brother. We had December as a good break from therapy (with only three sessions each week(!)) and both boys had an amazing Christmas holiday. Daniel was a proud Joseph in the school nativity, and we of course were proud parents. He sat up on stage among his friends and managed not to fall over despite all the pressure of the occasion! His one line was delivered with much excitement. A wonderful memory at the end of a memorable year. joseph

So, for all of you who are dragging yourselves to the gym this January, remember you are not alone! There is a little boy who is working on that treadmill too. He may be slow, he may be weak, and he is certainly exhausted,  but he is doing amazingly well!

I can’t wait to see what the next week of therapy brings us, and even better what the rest of 2015 may bring!

Posted in Uncategorized | Comments Off

One year since our sparking Gala night!

Time continues to fly, and it’s now a year since our amazing Gala night when we made our target! It’s also one year since the team at GOSH accepted Daniel for the SDR operation in the UK, so it seems a great opportunity to let you all know how Dan has been getting on recently.

The past couple of months have been a case of getting to grips with our (still very intensive) physio routine. Things have settled down a lot since the early days, but now the challenge is trying to fit therapy into a bit of ‘real life’. Daniel is in Year 2 now, and the pace of learning has gone up a notch. Of course school life is very busy for all the kids at this time of year. Daniel is no different, and we want him to enjoy as much of the school community life as possible. But instead of swimming and athletics classes like his peers, we are trying to squeeze in his usual physio sessions, riding and swimming into each evening, plus hospital appointments and NHS therapy sessions during the school day.
IMG_20140824_194529375 There never seem to be enough hours in the day and we constantly feel guilty that we are never doing ‘enough’. Luckily the school are still very understanding about how many hours he has missed from the classroom, and he is loving year 2 so much that he picks up the work without too much worry. Everyone is so pleased to see the progress he’s been making recently, so at least we can all see that the sacrifices are worth it!
DSC_0281Believe it or not, I was lucky enough to do one final fundraising visit last month. The girls of St Ignatius House at St Theresa’s of Effingham school have been fundraising for Daniel all year and in October I was able to update them on his progress and was given a cheque for an amazing £1000 (pictured).

So, what’s new since I last wrote? Well, best of all, Daniel continues to get more independent every day. I love watching him choose where to play, or just pottering around the house, something that would never have happened this time last year. It’s amazing to have a precious moment with his younger brother while Dan does something for himself (the school run has become a LOT smoother recently!), and we are even getting both boys to help with some of the household chores (it’s still a novelty, we’ll see how we go in a few month’s time!).

IMG_20141101_105427925
Just recently Daniel started getting himself down the stairs by himself – a huge leap forwards. It’s not quick, and it’s not pretty, but he gets to the top of the stairs by himself, then turns around and crawls down backwards. He seems pretty confident doing it, but even so, we are still hovering behind him for safety. Even better, we are working on him walking upstairs - holding on to the banisters on one side and a quad-stick on the other. That process isn’t quite independent yet but it’s developing well. We’ll probably always be there for safety while he climbs, but it’s a huge leap forwards from us carrying him up and down stairs as we have been doing until now.

IMG_20141028_103715229 On level ground, Dan is still very reliant on his walking frame, but his stability and manoeuvrability are so much better than before. He can cope on gentle slopes now, he can turn around in small spaces, and he can work his way around the frame to climb into it, even when it’s pointing the wrong way. All things that make life so much more manageable. We used the frame on holiday recently to play in some sprinklers, and both boys had a whale of a time!

Daniel’s confidence continues to blossom, and he’s finding it much easier to interact with his classmates too. His independent transfers mean that he now walks to assembly and sits with the others, rather than being pushed there in his wheelchair and sitting at the side while the others are on the floor. Ditto ‘circle time’, where he now sits with the rest of the class. These are just two small changes but there are lots of other examples where life is just a bit easier and a bit more normal for him.  It’s brilliant to see!

There have also been some surprising benefits – things that we never expected SDR to help with. For example, in the 14 months from May 2013- July 2014, Dan gained just 0.3kg in weight, and the consultants were beginning to worry about his extremely slow growth. In contrast, I had him weighed last week. In 4 months since he has got over the operation (July – October 2014) he has put on 1.5kg! That’s five times more in a quarter of the time, just by taking away his spasticity. Quite a difference, especially when you think how much more active he is these days.

Daniel’s dexterity has improved too. For example, his handwriting has always been abysmal. Those of you who have ever tried to read my own terrible handwriting will know that neatness is not something our family pride ourselves on, but even so, it would be great for him to write legibly. Last term his handwriting improved beyond recognition, as he has better core strength and can hold himself better. He is much happier and more confident that he can express himself on paper, and the school awarded him a ‘Headteacher’s award’ for trying so hard with it.

It’s not all been rosy though. We had some sad news recently, our wonderful private physio Anna is leaving to go back to Germany after 18 years in the UK. We’ll miss her sessions so much, as they are full of laughter and music, and Dan has no idea how hard he is actually working! I snapped a couple of pictures of him learning to separate his legs and push up – a hugely challenging move for Dan, and something that was utterly impossible pre-op.IMG_20141104_180039301

IMG_20141104_175956202

In an attempt to plug the gap that Anna will leave, we have booked a number of intensive residential sessions in specialist post-SDR exercise centres for 2015, so we’ll be travelling to Oxford in January, Cardiff in April and Scotland in May. Hopefully he’ll hit it off with one of the teams at these centres, as we are struggling to find an SDR-specialist physio locally. Meanwhile we’ll continue to work with the lovely NHS team and will look for private physio elsewhere. Anna, we will miss you!

Anna’s departure also means no more hippotherapy, as it is such a specialised technique that we’re unlikely to find another local practitioner. Luckily he loves the Riding for the Disabled club that he also attends, and  recently got awarded his first certificate in horse riding & horse care with the RDA, so we’ll keep that class going for as long as we can.

I hope that this blog has given you a taste of the  opportunities that your wonderful fundraising has given Daniel. Without the money that you fantastic people raised, we wouldn’t be able to do half the things that we have this year, and Daniel wouldn’t be seeing the progress that he has. When I think of all that was happening one year ago, and all the people who pulled together, both old friends who did made such incredible efforts (you know who you are!) and new friends who we met along the journey (and so do you!), it really blows me away. The past 18 months were like nothing else we have experienced, and you should all be so proud of what we achieved together. Thank you again for everything that you did to change Daniel’s life!

Posted in Uncategorized | Comments Off

Six months after the op – lots of hard work, lots of results, not enough blog updates (sorry!)

Yesterday – 21st August 2014 – marked six months after Daniel had his life-changing SDR operation. I can’t tell you what an amazing time this has been! To describe the journey as a rollercoaster ride would be a massive understatement – it’s been a complete whirlwind.

Screenshot_2014-08-21-22-30-07

Daniel (and all of us….) have been working incredibly hard to make the most of his chance – I am so proud of how much he has taken on, and how little he has complained about it all. He has had therapy most days during the past six months. He has been seeing two different physiotherapists, he’s had hydrotherapy and hippo (aka horse) therapy, as well as swimming and riding lessons during term time. We do stretches every day, use his standing frame daily and his trike as much as possible. It’s good to mix it up a little, as you can imagine!

So – what results are we seeing from all this effort?

I have to say that it’s a huge WOW on that front! Daniel has taken huge strides forward (if you’ll excuse the expression!) in the past 6 months. He has learnt so many new skills, his confidence is blossoming and his independence is growing. I last wrote a blog 3 months ago when he was first learning to stand up using quad sticks. He is now standing confidently using them, and is getting stronger as he stands against a wall. He is now crawling on all fours – previously he could only hold this position for a few seconds, and couldn’t really move anywhere. His use of the walking frame is more confident, far quicker and his stamina is far greater than before. He spent a good couple of hours stomping his frame around a field in the Peak District – exploring and loving every minute of it!

By far the biggest change can be seen with Daniel’s ‘transitions’ – his ability to get in and out of his equipment (walking frame, wheelchair etc). Before the operation, he was 100% reliant on us picking him and and putting him in his chair, nowadays he can crawl up to his chair and climb in without us being anywhere near him. You can see a home video of him getting in & out of his chair on this YouTube link. Quite a difference from the boy who used to lie there passively waiting for an adult to take him somewhere. I’m sure you can imagine the sense of freedom this gives him!

Screenshot_2014-08-21-22-33-23

Of course, this is just the start of the journey. We are still working on Dan walking with his quad sticks rather than using the bulky walking frame. We’re still working on him standing up independently, and there’s a long way to go with his stamina and stability all round. But oh-my-goodness the difference we can see already is just huge. I can’t tell you what a life-changing operation this has been for Daniel.

In between all the exercise, Daniel has been writing his own blog post for you – enjoy!

I have done lots of big improvements. This blog is writing all about my big improvements done after the operation. I am doing really well so far and big  improvements are coming such as getting  into my Wheelchair is getting a lot better and in kneeling by myself and standing at the wall and 4 point kneeling. I did not be able to get into my Wheelchair 2  weeks ago. I have been working really hard.”

He is so proud of himself, and rightly so.

Having seen what a change SDR can make even in 6 months, I’m so pleased to hear that the NHS are launching their two-year trial into SDR. There will be funding for 120 kids over the next two years across five hospitals in the UK. At the end of the two years a panel will look at the results and decide whether SDR should be funded on an ongoing basis. You can read the official NHS report here for more details. Of course this trial has been talked about for months (years, even) and there are still no confirmed dates for the first NHS procedures.  The five centres will be inundated with requests as word spreads about this operation, and the waiting lists are already bulging. I can only imagine how those families desperate for funding must be feeling. Not everyone is lucky enough to have the generosity of friends, family and community like Daniel did.

So, six months on, we are still seeing lots of progress, in fact we are seeing new skills and new confidence emerging daily. We are still loving the ‘wow’ moment when people see Daniel for the first time post-op, and immediately notice the change in him. It’s wonderful to see such rapid progress after years of working hard with no real payback. It’s amazing to be excited about Daniel’s future after years of being told he would gradually and inevitably lose what mobility he had.

We are optimistic about the future and we are delighted with the present. But mostly, we are just hugely hugely grateful to all of you who got us here! Once again, thank you.

Posted in Uncategorized | Comments Off

Three months in, and things are looking up!

So here we are, three months after the operation and now fully into the ‘aftercare’ phase of the process. Things are looking so much more manageable than they were last month. It’s still chaos around here, but at least there seems to be some progress to justify the massive effort! Daniel has finally (touch wood) recovered from the multitude of infections that he suffered in the early weeks, and for a good few days now he has been bright and perky. He’s still exhausted of course, and we are still asking him to give 110% each day, but he is coping so much better with the demands now that he is relatively healthy.

Screenshot_2014-05-27-21-01-28

The past week has been really encouraging, and every day it feels like Dan can manage something new. The walking frame is getting more and more use around the home and in school, in fact we’re trying to make it the routine way of getting around, instead of resorting to the wheelchair. Of course Daniel did use a walking frame before the op, but his gait was abysmal (legs dragging passively around behind him, usually crossed over and tangled up) and it wasn’t something that he could maintain for long. He now walks tall and uses his feet far better, although when he is tired or in a hurry (OK that covers nearly everything he does!) his legs can still drag. We can see Dan’s confidence and stamina improving all the time, and we’re hopeful that this will just get better and better with practice.

 

 

 

 

The next step is to try to use ‘quad sticks’. These are little walking sticks with a splayed end for balance. We have had a pair knocking around the house for ages, but Daniel didn’t really ‘get’ how to use them. Now with his improved strength and posture we can start to really make progress.

Last week Daniel stood up by himself, using only these sticks for balance, for thScreenshot_2014-05-27-20-47-18e very first time. He was practising on Tuesday evening during a physio session with Anna, and he managed a few seconds before falling over. We were so delighted!

Two days later (Thursday evening) he wanted to show my parents his new talent and he amazed us all by managing a full minute! There wasn’t a dry eye in the house.

I managed to catch the magic moment when he first stood up (this pic is a snapshot from the film), and the video has been picked up (via Facebook) by the Surrey Advertiser newspaper. They have put a link to the video on their Guildford news home page. You can see the video and read their nice write-up via this link.

We still have a long way to go with standing up using the quad sticks – he needs to have straighter legs, he needs better balance, strength and stamina.  But we can see improvements all the time and we are working daily on all these issues.

The big hope is that in time he will learn to walk using these sticks. We are starting to put in some practice. He’s doing really well so far, but as you can see from the picture, I’m holding the sticks steady, which makes a huge difference to his balance.

Whether his little brother is ready to greet him with a big hug, or whether he is trying to block Daniel’s path, I’ll leave to your imagination!

Screenshot_2014-05-27-20-49-04

The best thing about all these changes are the massive boost that they has given to Daniel’s confidence. There a so many little instances of better mobility around the house leading to more independence, and each one is just fantastic for him and for me. He is calling SDR his ‘miracle’ and is loving discovering new things each day!

Even the biggest journey starts with a small step, and I really feel that our journey is off to a great start. Thanks for being with us this far, and I’ll be sure to keep you posted!

Posted in Uncategorized | Comments Off

Two months after the op, and it’s back to school for Daniel

We are now 9 weeks after the operation, and Daniel started back at school full-time last Tuesday. He managed a day & a half before coming home for a rest – the poor kid is absolutely exhausted! Everyone had told us not to underestimate how tired he will be in this phase, but of course until you experience these things you don’t quite believe it! The only reason I’m not tending to his every grizzly whim right now is because he has gone back to bed for a nice quiet rest (at mid-day on a Sunday). It’s not been an easy few weeks, I have to say!

I guess it’s not surprising that he is tired, since he is learning to use his body all over again. A newborn baby spends years getting to grips with how their legs move (all that kicking is valuable practice!) and spend hours grabbing at their feet. Daniel missed those important phases, and is having to go through all those processes now, only with a less-malleable-6-year old brain, and all the additional social and school expectations that we place on him. Oh yes, and he had tonsillitis, now has a sinus infection, and is on his second round of antibiotics this month. Poor kid, maybe I should go easy on the homework! Smilebox_1252516842

Meanwhile, the number of daily activities adds up, and they don’t leave a lot of time for fun. Each day he needs an hour in the standing frame, two hours in his gaiters,  10-20 minutes on his artificial horse, stretches and strengthening exercises with us each evening, and the list goes on. Add in therapy sessions, which happen most days, and of course going to school, and small matters like eating, dressing, washing and going to the loo (all of which take ages for Daniel). It’s hard for normal family life to get a look-in.

Anyway, enough of me moaning about little day-to-day grumbles. I happily admit that the ‘big stuff’ is going really well – hurrah! Daniels’ scar is healed (just a red line now)and we got through the post-op recovery phase without any injuries. We are now able to take a few more risks (he can ride a horse again, for example), and we can start to push him a little bit more in the physio sessions. Most important of all, Dan’s physical strength and abilities are coming on in leaps and bounds (unfortunately not literally!).
IMG_20140415_151809016 (1)
As I mentioned, Daniel has been really poorly, so we had to cancel lots of booked therapy over the Easter holidays. It was all very frustrating. Until recently, Daniel had been so exhausted and floppy with his various illnesses that we hadn’t really had any idea of what he was capable of, but on Friday evening he was really perky, and we managed a really good session of exercises with him. Perhaps I can give you an example of his new-found abilities?

‘Four-point kneeling’ (aka being on all fours) is an important position requiring strength and balance. Without being able to hold that position, you can’t crawl, and reciprocal crawling is a great way to build strength and stamina for walking. Before the operation Daniel could just about get into the four-point-kneeling position, and could hold it for a few seconds at best, before falling to one side. On Friday he got into position easily and then held it for over 4 minutes, including shuffling around  180° on the spot, and raising each arm in turn to the front and to the side (all requiring constant adjustment of balance). Best of all, he did it all with a big grin on his face! That’s just one example, we are finding lots of moves where he has better strength and balance than before. Of course it’s never all straightforward, and his core strength is still below what it was pre-op, so there is lots of work to do on that score. But we always expected that, and now we are able to work on his strength without that pesky spasticity getting in the way.

Simon and I are also delighted with Daniel’s increased feelings of independence. Part of that comes from a whizzy new wheelchair (purchased second hand thanks to our wonderful fundraisers) which he can move around the room by himself, but part of it comes from his new physical abilities and confidence. A few months ago Daniel would never have thought of getting out of bed, but last week he climbed out and crept along the floor to find me. It wasn’t a pretty set of movements, but to find him in a different place to where I’d left him was an amazing sight!

Yesterday he took himself out of his wheelchair and into his dining chair without Simon even asking him to. Again, it’s not just a matter of physical ability, it’s the concept that he can start to do things for himself, which is a huge thing for an extremely dependent child like Daniel. Bring it on!
naomi
Finally, a couple of shout-outs to some amazing fundraisers. This morning Naomi took on the ‘First of the Summer Tri’. This was her first ever triathlon and took place in beautiful Holmfirth (home of Clegg, Compo and the rest). She raised over £230 for Daniel, a fantastic sum – thanks Naomi!

aimee

 

 

 

A couple of weeks ago, my colleague Aimée ran the Paris Marathon. She left behind a toenail, but raised an incredible £1420. Thanks Aimée  you are a superstar!

Simon’s colleague Bal took on the London marathon a week later and raised over £900 for Daniel as well as £900 for Cancer Research. Huge thanks Bal, that’s a fantastic achievement!10153961_10151918530931706_1080644973684774223_n

 

 

 

 

So, there is a summary of our life two months on. I think it’s safe to say that we are doing a marathon of our own. We are all exhausted, and running on empty, but it’s good to be getting into a routine with school and therapy sessions. I just really really hope that Daniel will be fighting fit soon, and able to cope a bit better with all that we are asking of him. We’ve been told by the experts that months 3-6 post-op are a time of great progress, so I’m really looking forward to seeing what the next couple of months brings. Watch this space!

Meanwhile, I know I’ve said it before, but thank you all again for getting us here – together this little boy’s life has been changed beyond recognition!

Posted in Uncategorized | Comments Off

Six weeks post-op, where are the days going?!

It is now six weeks after Daniel’s operation, and we’ve been home for nearly three weeks. We are gradually getting back to a bit of normality! Daniel’s recovery from the operation has been incredibly fast, and he has been coping really well with the challenge of fitting daily therapy & stretches into a routine. Having said that, life hasn’t been easy for anyone, and we are all absolutely exhausted! It’s a rollercoaster of mixed emotion, with delight at each new day’s progress, and frustration at how little time & energy there is left for anything else in life!

Daniel’s therapy timetable is absolutely crippling (sorry, couldn’t resist). For the next few months, he will be doing seven different weekly activities. There will be two sessions in the water (weekly hydrotherapy with trained physios, and one swimming lesson with Spectrum’s finest). He will be able to ride twice a week (once with the Riding for the Disabled, and one session of hippotherapy with our private physio, Anna). He will see Anna for two 60 minute ‘dry-land’ physio sessions each week, and finally, he will see our NHS physio Michelle once per week at the community health centre for physiotherapy. Of course there is also an hour in the standing frame and daily strengthening & stretching exercises that we do with him each evening. Simply arranging this crazy schedule has been a huge challenge, and I feel like I am on one continuous school run at the moment, driving him from one appointment to another!

One of our biggest worries had been the additional challenge of two hours wearing ‘gaiters’ to stretch his legs each day, but luckily Daniel is able to tolerate wearing them  in bed at night. Our new routine is that he drops off to sleep wearing them, and we remove them around 10pm when we go to bed ourselves. Sounds great in theory, but the reality of wrestling with eight separate long & strong velcro wraps, under the covers and in the dark (without swearing loudly enough to wake up two sleeping kiddies) is another matter! We haven’t tried it after a medicinal drink yet either, not looking forward to adding alcohol into the equation!

Enough of the moaning, we are so lucky that things are going so well, and so very quickly. Our physio Anna (who has worked with a number of post-SDR children) can’t believe how well he has recovered, and has commented that every other child has still been in pain at this stage in the rehab process. They had predicted tiredness and a lot of additional weakness in these early days, and luckily there isn’t much of either.IMG_20140318_095608346_HDR (1)

Dan even started back to school (on a part-time basis) last week. As you can see from this photo he sent to his classmates, he had been missing them a lot. He managed to take part in the school assembly on Wednesday (learning his lines in record time) which was lovely to see. Although we are taking it slowly, he is delighted to be back, and his classmates were so excited to see him!

So, that’s our life now we are back in Guildford. Exhausting but very positive!

You are probably wondering how much difference all this effort is making? Well, the change in Daniel’s body is massive. The high tone (spasticity) has gone completely, and his legs are completely floppy instead of being stiff as a board, as they used to be. His ‘bad old’ tendency to scissor his legs together has almost entirely stopped, meaning that he can place his feet in a much more stable position when trying to stand. The challenge is now to develop strength and control and to learn to use those lovely floppy legs!Screenshot_2014-04-02-20-26-15

A casual observer wouldn’t notice a massive change in Daniel’s movements yet. The doctors had predicted 3-6 months of recovery before he was back to his original mobility, so we were fully expecting things to be worse than they actually are. Already he is sitting straighter, moving more easily and it’s easier to get him in & out of his various pieces of equipment. You can see how proud he is of his new abilities in this little video. All of this is fantastic.

Of course, we are in this for the long haul and the improvements will be seen for the next couple of years. And when they come, they will be permanent, as Daniel is no longer fighting the losing battle against spasticity.

We are still in the recovery phase (6-8 weeks after the operation), where any twisting, pulling or impact could seriously damage Dan’s spine. All that will change after Easter, when we can really start to make him work! But for now, Daniel is predictably weak and uncoordinated. His brain has to relearn how to control his body, and he has to make those connections that allow him to wiggle his toes (another daily exercise!) and move his feet, since he has never done this before. But (and it’s a big ‘but’) he is able to learn these new movements in a much more natural way because he isn’t constantly fighting against his own legs.

As one inspiring 10-year old SDR patient said as he woke up after his operation:

“The war is over. Now there is peace”.

Posted in Uncategorized | Comments Off

Just about to go home-end of week 3-(physio sessions in progress) (Guest post by Daniel)

I have just been able to do loads and loads of Positions, It is AMAZING how many positions I can do in only THREE WEEKS! And now its time for me to go home.

video and photo contents:

Getting in to my Wheelchair (video 1)

Pushing Deepti over (video 2)

(early after the operation) trying to go round the bench but fell over (video 3)

At OCTAV BOTNAR WING looking at the rainbow on the wall (changing) sitting in wheelchair (photo 1) IMG_20140314_142713812

 

 

 

 

 

 

 

 

sitting in wheelchair (with  the Police) (photo 2)IMG_20140314_142513587_HDR

 

 

 

 

 

pushing Deepti over (photo 3)IMG_20140314_114628686_HDR

 

 

 

 

 

IMG_20140314_122450342_HDRat my sticker chart with Deepti,  Alice, Mummy, and Clare (photo 4)

 

 

 

IMG_20140314_142626727_HDR

 

 

 

 

Outside OCTAV BOTNAR WING (by the words OCTAV BOTNAR WING) (photo 5).

 

 

Posted in Uncategorized | Comments Off

Home at last!

We are safely back in Guildford, I’m delighted to say! And what a difference a month away makes – the garden is full of spring flowers and our suburban house seems so quiet after the hustle & bustle of London. Both boys (and to be honest, both parents) are visibly relieved at being back to normal. It does feel like we’ve been gone for months rather than 3 weeks, with the amount we have packed in to the time away, and of course all the huge emotional impact of our time in London.

Our last few days in London were full of the same busy routine as previously- Daniel would wake up around 7am and would do some quick stretches in bed, before getting up and doing an hour in the standing frame 7:30-8:30. After breakfast it would be time for the morning physio session 9:30-11:00. After a quick lunch break (and when I say ‘break’ I mean trying to give Dan some much-needed chill time while I hurriedly catch up on all the usual admin of the day!) it was then back to physio for 2:00-3:30, then home in time for some stretches in the gaiters before dinner and bed. Phew!

We did have two hydrotherapy sessions this week instead of the afternoon physio sessions on Tuesday & Wednesday. These were a chance to see how Daniel’s ‘new legs’ work in the water, and the answer is ‘not bad at all’! He was as confident in the water as ever, and his legs were kicking like crazy! With arm bands on he was able to lie on his back and move across the pool. It’s all a bit random but he is just getting used to how they work, so that’s totally expected. I saw huge progress from how he was pre-op, and I feel really optimistic about the chances of him swimming independently (OK perhaps not a recognisable stroke, but that’s not a worry to me!). Also, the pool had disco lights, and a massive beach ball bigger than Daniel, both of which made the sessions brilliant fun!

Screenshot_2014-03-15-21-11-20

We were actually sad to see the last of the physio team after our final Friday session, they have become our constant companions during these crazy few weeks. It must be amazing for them to see each child coming off the ward and learning their first few new skills. Daniel can’t wait to go back in six months (when we have a formal day of follow-up appointments) to show them what he has learnt!

Speaking of Daniel showing off his new skills, he was keen to write another blog post so has put together some photos and videos. I’ll post it tomorrow, hope you enjoy it! It is all his own work so may seem a bit random, especially his choice of videos, but he wanted to share all his hard work with you!

Before I sign off, I just want to say thanks again to all our half-marathon runners. We have been featured in the gallery on the Surrey Half Marathon home page (do check us out on http://surreyhalfmarathon.co.uk/) which is a bit of fame for all the team. Thanks to Toby & Becky for making us one of their official charities for the race! And speaking of races, my cousin Moyra and her friends took on a very muddy 6.6km challenge today, it was Moyra’s first ever race, and they raised about £700 in the process, so huge thanks to the muddy Hummingbirds!

So that’s it for our London journey. Of course the hard work doesn’t stop now we are back in Guildford. The stretches will become part of our daily routine for the foreseeable future (in fact probably for the rest of Daniel’s life) and we will have intensive physio for as long as we can fund it! That’s where all your amazing extra fundraising has come in, we have enough money to pay for physio sessions for at least the next few years and now we can really start to reap the rewards. I can’t wait to see where the next stage will take us!

Thank you everyone for all your support, as ever. Looking forward to getting back to normal and seeing many of you soon.

Posted in Uncategorized | Comments Off