So, what's been going on since I last updated?
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!
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.
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).
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'.
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!
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!
Once on the beach, Daniel spent a lot of time happily digging.....
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.
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.....
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.
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.
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....)
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.
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.
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.
Daniel's week currently consists of:
- 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.
- 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.
- 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.
- 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.
- Hydrotherapy - provided by the NHS after school one day a week.
- A long (often two hours) session of physio on a Saturday morning, with either Rich or myself.
- Stretches - done every day.
- 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.
- Swimming - this is fun but also physio.
- Horseriding - also fun but exhausting because it works his weak core so hard.
- Practising stick walking whenever possible at home (this makes even going to the toilet or to the table for tea a major activity).
- knee immobiliser worn overnight to hold his leg straight. He puts up with this discomfort with no fuss at all.
- 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.....
- French Club, which is the only extra-curricular activity in his week that he himself chooses and is not physio-related.
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.....
6.45am - Awoken by us (and not happy about it in general).
7 am - Mike Poole exercise programme (in his pyjamas)....
7.30am - brief rest and getting dressed.
7.45 am - breakfast
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.
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.
And, of course, none of that takes into account that we have two 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).
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.