The new routine.......

This week we have had a taste of just how hard it is going to be to fit in all the physio into our daily lives. Daniel has only been back to school for the mornings this week, and yet we have still struggled to do everything we should be doing. I have also returned to work for the first time since October (only a few hours a week, but a shock to the system nevertheless!)

In the last 7 days, Daniel has had:

• 5 half days at school (where as well as his normal routine, his teaching assistants have tried to fit in as many 'walks' as possible, for instance walking to assembly, to the toilet, walking out to the car when I collect him etc)

• 14 sets of stretches performed (taking about 20 minutes each time, morning and night each day)

• 4 half hour sessions in his standing frame (should have been 7, but it doesn't quite fit right with the new splints so I need to wait to ask our physio to adjust it).

• 7 lots of the home exercises performed (taking between 30 - 60 mins each time, depending on how much time we have, how well we do them, and whether Daniel is 'in the mood' or not). 

• 3 visits from a physiotherapist, each taking an hour.

• 1 session of hydrotherapy (1 hour).

• 2 visits from an occupational therapist, changing equipment and asking Daniel to demonstrate how he transfers between walker, toilet, wheelchair etc, so she can check safety.

• One horse-riding session (today - more about that in a minute)

• One go on his new treadmill (also today - again more below)

• 6 nights with a knee immobiliser keeping one leg straight all night (he gets Sunday night off!)

I think it would be fair to say that he has been busy! Obviously, there have also been the school reading books, spellings, walking round the house and being nagged constantly by me about sitting properly. It has definitely been a struggle, and it is slightly depressing to think that Daniel is only half time at school right now, we will have to build back to full-time (at the moment he is exhausted but already complaining about me collecting him at lunchtime, and wanting to stay all day). He will also have swimming once a week, and we will need to try to find time for him to walk on the treadmill every day, if possible.

That said, Daniel has mostly remained his normal cheery self. He has been happy to be back at school (and so has Lucy), and has enjoyed the physio and hydrotherapy sessions, although he is much less keen on doing the home exercises with Mummy!

Today he has had his first session at Riding for the Disabled. He has actually been on the waiting list for this for nearly a year, so it is a fortunate coincidence that a place has come up now. I say 'fortunate' because horse-riding is brilliant for building core stability and balance, as well as giving the adductor muscles a subtle stretch. Daniel had a wonderful time (although it was freezing cold and he was dressed up in as many layers as I could physically get on him), but it was clear to me just how far we have to go in building his trunk muscles, as he really struggled to sit for the half hour, and had walkers walking on both sides, holding a belt round his middle, to ensure he didn't slide off. Hopefully we will see him improve week on week as his trunk gets stronger, and riding should be a lovely reward at the end of a hard week of physio.

This week Daniel's treadmill arrived and Rich put it together yesterday. Today Daniel had his first try on it and it was a brilliant indication of just how much progress he has made in the last few weeks. The last time he had been on a treadmill was just before we left St Louis. The therapist then had to place his legs for him, as he couldn't move them fast enough to keep up with the treadmill on its slowest setting (0.2 mph). Today, he easily kept up, with just a little support at his hips from Rich. We just did three separate one minute bursts today, but over the next few weeks will now aim to up the speed and the time, to build endurance. Lucy took this bit of video, which gives you the idea.......

So, hopefully not too bad a start to our new routine, although not perfect either. I suspect we will continue to struggle with the feeling that we are either not doing enough physio, or that he is missing too much school. Daniel's trying hard though, and that's all we can ask.......