Tuesday, 29 October 2013

Back to Perth......

Last week we made the long journey back up to Scotland, for another week of intensive strength training at MP Fitness, near Perth. Daniel was booked in for seven days on the trot of two hours a day in the gym. We were quite worried before we went as to how well Daniel would cope, considering he has struggled so much with illness this term, right up to the week before we set off. However our little champ showed he was up to the challenge once again, and worked really hard. (In fact the person that was ill all week turned out to be Rich, which is always depressing when you have taken holiday from work). We were encouraged that despite all the set backs in recent weeks, Mike could still see improvements in Daniel's strength since we were there in the summer, and Daniel then managed to build further on that during the week.

So...... LOTS of hard work in the gym took place.

As we found back in the summer, it was tough for him at times, and he was pushed to his limits, with tears on a few occasions (though always brief). Daniel tried his absolute best and the only low point was Thursday's session, when Daniel was on the early slot (7-9am). Since we were staying a twenty minute drive away from the gym, a very early start was required to get him up, dressed, breakfasted etc and drive to the gym by 7am.  Perhaps unsurprisingly he was not at his best that morning and Mike (unusually) took pity on him and gave him a gentler session. Here's Daniel arriving at the gym in the dark and the cold......

In terms of progress, as you might hope after spending 14 hours in the gym in one week, Daniel built a bit more strength. He also worked a lot on standing balancing, which he still finds extremely difficult with only his short splints for support. The reasons for that are probably a combination of weakness around his middle (which is of course stronger than it was, but still weak in the scheme of things), plus innate balance problems in his brain linked to his disability, plus possibly a vision issue relating to balance. We just have to practise, practise, practise. However, he can now manage a few seconds, like this......

And with that small amount of balance, Mike started teaching him to take independent steps. This is incredibly hard for Daniel, with what must feel like a million things to think about, and Mike made him repeat the exercise over fifty times, to try to "build the pathways in the brain"!

What was Lucy up to all this time? The answer is a mixture of time spent in the gym watching Daniel's sessions, schoolwork (since both children should have been at school last week), and trips to the playground.........

..... Not forgetting her absolute favourite activity of the week, which was feeding the goats on the site where we were staying. She would happily have fed them most of the food we had in the cupboard!

Daniel enjoyed the goats too, although he was a little less confident than Luce. Here he is conquering his fear, and rather pleased with himself.....

We managed a bit of quality time as a family too, and a couple of tourist activities (I must admit that it is a fortunate bonus that MP Fitness is situated in beautiful Perthshire, with plenty to do nearby). 

We did some castle visiting, and Daniel, whose current obsession is the Vikings, treated himself to a viking helmet, which he absolutely loves.

We also went to the Caithness Paperweight factory, watched some paperweights being made and did some glass painting.

.......and had the occasional pub lunch! For anyone going up to Mike Poole. we would definitely recommend The Wheel Inn, just down the road from MP Fitness. Delicious pub food and the children loved the booths with the tv screens.  We had Monsters Inc. showing while we ate - it ended up being a VERY long lunch!

On our last day, Daniel (and indeed all of us) had an extra treat. Daniel's 'SDR twin' Brooke, who you may remember had both her operations on the same day as Daniel, had just arrived in Scotland ready to start her intensive week of work with Mike the next day. Daniel was thrilled to see her, and Lucy slipped back into playing with Brooke's sisters Neve and Nadine as if they had never been apart! All in all it was a lovely relaxing afternoon, much enjoyed by all.

Yesterday we made the long drive home, and were relieved to find that the big storm had managed to miss Cheltenham. The week away was definitely worth the many hours in the car, and we again feel we have inched forward another little bit. This morning we started our new exercise programme from Mike, and Daniel started to catch up on his missed school work.  Business as usual!

Sunday, 13 October 2013

Autumn arrives again...... and nearly a year has gone by!

Daniel is quite fond of the phrase 'There's good news and there's bad news' and he always prefers to hear the bad news first, so I will adopt that model in this update.

The bad news is that Daniel has continued to be poorly, with one thing after another, for several weeks now. In fact, by my calculations, he has not yet managed a full week at school this term. This has been frustrating for everyone, with not only school time but also huge amounts of physio time missed. He has lost muscle tone and at times struggled even to sit up straight. Times like this remind us how hard Daniel has to work at all things physical, because as soon as he is unwell he just can't do it.

However, since I had a big moan in my last blog post, I shall avoid that here, and move straight on to the good news, or in other words, the high points of the last few weeks.

In mid-September, Sunday riding started again. Cotswold RDA is based at Cheltenham Racecourse, which is not only surrounded by lovely countryside, but also feels like a rather special place to ride......

Every Saturday morning, Rich and Daniel work through a long (often 2 hour) physio session together. Some of the recent sessions have been rather a write-off, due to Daniel being too tired, or too poorly. However, a couple of weeks ago, in a tremendous session, he showed us that he is still making progress, by achieving something he has been working towards for years (literally!) He climbed on to the physio bench independently! First he did it by his own method, and then astonished us by going on to do it the 'proper' way, going through a half high kneel position. If he can become confident at this it will allow him to climb up off the floor into a chair, or his wheelchair, so it is an immensely important functional skill. It's hard work, and since the next illness kicked in Daniel has only managed to reproduce it once or twice, but the fact that he has shown he can do it means that with practice he will eventually do it with confidence. Here's the video (with apologies for the self-indulgent Star Wars reference!)

So, we are now in mid-October, and Daniel is almost 11 months post op. Some of the families we met in St Louis are coming up to their 1 year post op point this week, and yesterday we met with Sophia and George to celebrate their first anniversary! It was lovely to catch up with the families, and let the children spend time together, as well as raising a toast to all they have achieved in the last year.

Daniel was on his feet for hours, and all the children had fun playing and dancing. In fact, between them they had some pretty groovy moves going....

It should never be underestimated how much of a boost Daniel receives to his self esteem from spending time with other children who have CP, have undergone SDR, and go through the same gruelling physio schedule as he does. Despite the fact that he has been ill all week, he was on great form and had a wonderful time.

From our perspective, seeing these three children dancing together, and remembering that a year ago none of them could walk, was a powerful reminder of just how far they have all come, and what special little people they are.