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.
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!
Believe 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!).
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.
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.
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!