Monday, 21 January 2013


Last week was rather a week of two halves. From Monday to Thursday we were fairly efficient in the new routine with visits from physios on Monday, Wednesday and Thursday and hydrotherapy on Tuesday. He did half days at school, fitting round the physio.

This photo was taken on Monday, working on balance and core stability on the peanut ball with Janet, who has been Daniel's NHS physio since he was two.

Then, in the early hours of Friday, the snow arrived. I am one of those grumpy people who hates snow! Snow and wheelchairs absolutely do not go together and Daniel is rather a long way from being steady enough on his feet to walk in his walker. Therefore, he was unable to go to school on Friday (even though the children's school seemed to be about the only school in the county that managed to stay open) and essentially had to stay in the house all weekend, restricted to the home exercises and the treadmill. Swimming, horse riding and pretty much everything else fun was cancelled due to the snow.

We did manage a snow play on Friday afternoon. Snow play is extremely difficult if you can't stand up and the fact that we have not been able to enjoy it as a family has always been one of the reasons I hate snow. This year I did think that Daniel might like to stand in the snow in his walker, but he declared he didn't want to 'get it dirty' and denied me that photo opportunity, instead choosing to do this....

Lucy then also decided that looked like fun....

Today, with a partial thaw, we did manage to get out and about again. The children were able to go to school and as well as a visit from the physio, Daniel also had an appointment with his paediatrician. This was the first time she had seen him since his ops, and she seemed very pleased. Like the rest of us, she is looking forward to seeing what he achieves over the next couple of years.

Daniel was also able to use the hospital corridors for a nice long walk, all the way back from Paediatric Outpatients, almost to the car park.

I realised that although I mentioned a few weeks ago that we were teaching Daniel to transfer from his walker to gamma chair, and back again, I had never updated that for the last couple of weeks he has been able to do it. Here he is coming to the table for his meal tonight....

Sunday, 13 January 2013

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.......

Sunday, 6 January 2013

Happy New Year.......

We had quite a few visitors between Christmas and New Year. It was really lovely to catch up with everyone, but it did make it even trickier to find time to fit in all the home exercises! The children particularly enjoyed catching up with their little cousin Sam, and being a bad influence on him (introducing him to breakfast TV in their pyjamas.......)

Once into 2013 we have again plodded on doing about an hour of physio ourselves with Daniel each day. Plus we had a visit from our private physio on Wednesday, have continued to get Daniel walking whenever the opportunity presents itself, and have also had him out on his trike as much as possible, which is great for strengthening his legs. This photo also shows a landmark for Lucy, because she had a 'big girl' bike from Father Christmas, and despite all the rain, which meant we could only venture out in ten minute bursts, she has learned to ride it! She is very proud of herself and her achievement, and for me it has been quite nice to help Lucy struggle (albeit temporarily) and persevere to achieve something physical, instead of Daniel.

The big event of the week was our trip to Brainwave on Thursday. We have been going to Brainwave every 4-6 months since Daniel was two and a half, for his progress to be reassessed, and for him to have a new exercise programme. We were therefore looking forward not only to showing off Daniel's new skills, but also having Dawn's perspective about the areas we most need to focus on. The day started well, with Daniel walking into the centre for the very first time, which earned him a certificate....

Certificate presentation ceremony...

He worked hard all day, and we came away with a few new exercises to look at, as well as our other home exercises.

At the end of the day, he also had his big reward, something he has been eagerly anticipating for weeks and weeks..... to go in the hydro pool! It's the first time since before his operations that he has been able to go swimming. Ever since he was a baby Daniel has loved being in the water, and has no fear at all! He particularly enjoys swimming under water and 'diving' to the bottom of the pool to pick up a brick or similar - this requires someone else to push him down and pull him back up again, but he absolutely loves it.

All in all, it was an excellent day (although Daniel was totally exhausted on Friday), and our thanks to Dawn, Mike and Mervin for their input. We hope Daniel will have even more to show Dawn by the time we next see her in the summer.

Tomorrow it is back to school for both children, although Daniel will only be going mornings for now. I will admit to being rather apprehensive as to how on earth we achieve the right balance between his schoolwork, physio and rest / play time.