Six months ago today.......

It's a very funny thought - one year ago today we launched Daniel's fundraising website and we were right at the start of our journey. Exactly six months ago Daniel was in the operating theatre having his SDR op. This morning I watched him walk from the car, all the way round the side of the school, into the playground, say "Hi" to his friends, and join his class line, before walking into school. Just amazing really.

Here's a bit of video from last week. It's Daniel coming down the corridor to meet me at the end of the school day. He was singing away to himself because he had just had "such an awesome day". I have no idea where he picked up such Americanisms.................

Two steps forward, one step backwards.......

We knew that the rehabilitation and progress after SDR was very much inch by inch; tiny gains and little bits of progress, which when you look back every few months add up to quite noticeable changes. However, this requires the commitment to the intensive physio routine. After a very successful phase of physio during the Easter holiday we have been rather thwarted in the last month, because Daniel has had two separate bouts of illness, each resulting in around a week of lost physio time, as well as yet more missed school.

However, much as that was frustrating, progress has certainly not stalled altogether and Daniel continues to inch forwards.

Here are a couple of clips showing new skills. The first one is Daniel managing to rise up on his toes. He is standing in the parallel bars so able to use his hands on the bars to help push, but this is the first time he has been able to do it, and a sign his calf muscles are getting stronger. The clip also illustrates why he wears splints with shoes to keep his feet in good alignment, since he pronates quite badly (ankle rolls in) particularly on his right foot. That's a very common CP thing.

This second clip shows Daniel's first real attempt at walking on his knees. He's not quite there yet, but it's coming along. Please try not to look at the messy room behind him. I would like to claim it isn't normally like that, but that wouldn't be the truth........

Before he became ill, as well as the walking he had been doing inside school, Daniel had started walking round every morning from where we park the car to the playground at the back of school. It's a surprisingly long and challenging walk for him with several bends, small slopes up then down etc, and as you would expect, there are children and parents all around, which makes him a bit nervous. However, he thoroughly enjoys being able to stand in his class line with his friends.

He is now out of his tall splints and wearing just his small splints almost full time, although he has not yet walked for more than about 20 minutes at a time in them, and there are signs they may be rubbing a little. We need to keep an eye on that.

Since I spend so much time on here talking about how hard Daniel has to work at his physio etc, I thought I would add one photo of his leisure time. Daniel does not read much for pleasure because his scanning difficulties, as well as the physical challenge of sitting up, holding a book etc, make it extremely tiring for him. He also struggles with full pages of unbroken text, although he is quite capable of reading the same text if it is broken up. However, he has recently discovered old-fashioned Star Wars comics, which can be bought weekly from the little comic shop in town, and he likes to sit propped up in our bed at the weekends to read one.

We are coming up to six months after Daniel's surgery, and will soon start making the video to send to St Louis for them to assess his progress at this point. We hope they will be pleased with what they see!

Easter holidays.....

Today is the last day of the children's Easter holidays, which have been mainly dominated by Daniel's physio, although we have managed lots of relaxing quality family time too.

This is sneaky physio disguised as quality family time!

After having a 'physio break' during the last week of term, Daniel has had 3 private physio sessions and one NHS session while off school. Lots of hard work....

 

Electrical muscle stimulation

We have also worked hard at the home exercises. It's fair to say that although Daniel has enjoyed his sessions with the physiotherapists, he has not been so keen on doing the physio at home with Mum! Some days have been not so good but in general he has worked well, and we all saw the results, because this clip shows his new skill! He is only wearing his short splints so he can't really balance once he is up, but it's another new milestone.

The major thing that I realised yesterday is that Daniel has only actually been in his wheelchair TWICE in the whole Easter holiday, and both of those occasions were when he needed to sit down and be stable and comfortable for a time (eg when watching Lucy have her hair cut). He has just walked in his walker everywhere. We are still often pushing the wheelchair (empty or with Lucy hitching a lift) in case he needs it, but have also started leaving it in the car sometimes - a funny feeling.

He has walked around Sainsbury's.......

....around Cribb's Causeway (shopping mall)

....and even around Cotswold Wildlife Park (in the freezing cold).

We don't always notice the progress on a day to day basis, perhaps because we are too close, or because we are too busy doing the physio. Or maybe because we are still caught up coping with the ways in which Daniel does not yet have any independence, like dressing or toileting. However, every now and again we are able to step back and landmarks like leaving the wheelchair in the car when we go to places help us to realise just how far he has come.

It is not only the distances he is walking that have developed considerably. He is now able to walk and talk at the same time (he slows down a little but he used to have to stop completely in order to say something and can now multi-task a bit). In this clip he is complaining that the monkeys are making so much noise that I can't take a decent video of him walking!!

Here is another example. In this clip he is on a more 'off-road' surface. It is uneven and on a downward slope. He is finding it hard, but managing without our intervention.

So, while it is undoubtedly very hard slog, the progress rate is remarkable. We were also incredibly proud to hear at Daniel's parents' evening at the end of last term, that although his school attendence is barely above 50% since September, which has inevitably had an effect on his attainment, he is still doing well. More importantly, he is still approaching his work with great enthusiasm and commitment.

Tomorrow we start the new term, and pick up our juggling balls again!

Finally, some of you may be interested in this. It is part of a documentary series following some children and staff of St Louis Children's Hospital. It has been airing on American TV on Saturday nights. I myself have been enjoying the whole series, but thought I would share this particular episode because it features a child who has travelled from Ireland to have SDR with Dr Park. It shows so many of the places we remember so well, even the waiting room where we sat to receive the progress calls during the op itself. Of course Dr Park features, and even Mad Mike the physio puts in an appearance at the end. Warning for anyone squeamish though - it also shows a little of the operation itself.  I will admit that I allowed myself a couple of tears.

SDR Party Video.....

..... is on this link! It captures the fun of the evening, plus the commitment of the team from St Louis who flew over especially for the event! If you watch carefully you can spot Daniel dancing in his wheelchair at 2min 50 seconds!

Party time......

Apologies for the long gap between updates. We thought Daniel's return to full-time school would be challenging, and indeed it has been. We have had to evolve another new routine, which has involved him doing around an hour of stretching and exercises every morning before school starts (rather a squeeze to fit in), then most days he has either an hour with a physiotherapist at school, or hydrotherapy after school. School also have to fit in as much walking as possible, and manage the almost impossible balance between fitting in the physio, and then catching up the schoolwork he misses. He has become extremely tired in the run up to the end of term and we plan to ease off this week for the last week of term, before picking up again over the Easter break when he is fresher. He is getting stronger all the time, but his trunk weakness remains an issue, particularly because he is tighter on his right hand side. This is just one example of where the effect of cerebral palsy on the body is so complicated, and children are often asymmetric in their strength, and the muscles in which they are stiff. For Daniel, it means he tends to sit on his right buttock and lean to the right when sitting, tipping his head to the left to balance himself. Needless to say that is really not good at all for his back in the long term, so we are working as hard as we can on trunk and hip stability, and spending a lot of time nagging him about transferring his weight over to his other buttock.

He continues to do well though, particularly with his walking. He is now 4 months post op and the overall changes are considerable. We are also incredibly proud of the way he has maintained his enthusiasm for school and his work, despite the fact that we are having to squeeze it in here and there where we can.

Last night we had a lovely time at the 3rd annual UK SDR party, held in Daventry. This was attended by 93 children from UK and Ireland, who have either had SDR, or (in a few cases) are due to have it soon. The vast majority of them were operated on by Dr Park in St Louis. It was a wonderful celebration of all that these children are achieving on a daily basis, and a chance for families who understand each other to share their experiences (and physio tips). The party was also attended by Dr Park, his charming wife (who also seems to take a personal interest in all the children's progress) and others from St Louis, including Mad Mike the physio.We had chance to catch up with several families with whom we had overlapped in St Louis, and to reminisce a little!

Daniel has been full of cold this week, so wasn't quite himself, but he still thoroughly enjoyed it. It is also of huge benefit to him to see so many children who not only share his disability, but have also had the same operation. All the children loved seeing the team from St Louis, especially Dr Park, who made an effort to talk to each and every child individually. Here are some memories of the evening.....

Remembering those happy times in the siblings' playroom

Green ribbon 'CP Awareness' buns, plus 'The Arch' cake!

 Around 9pm, Daniel was definitely flagging....

.....although Lucy was still going strong and had to be dragged off the dance floor...

However, once we got them back to the room (nearly 10pm by this time) it was clear that even Lucy was wiped out!

Tomorrow Daniel will be seven years old. It feels like a milestone birthday, simply because of all he has achieved in the last year. We are incredibly proud of him, and of Lucy.  Happy Birthday, son.

Been shopping........

We've had a lovely, relaxed half term this week. Daniel has mainly had a break from physio, in order to allow him to recover, and stop him getting too tired. We have continued to do his stretches twice a day (those can never be missed unless he is simply too poorly to tolerate them), and have done a handful of the home exercises on some days. However, we have had no sessions with a physio, and have tried not to push him at all.

He has enjoyed some quality time with Grandma and Grandpa......

.....and been swimming.....

...and has continued to walk, walk, walk whenever an opportunity presents itself....

At the moment, Daniel is still mainly wearing his full splints, because he experienced some pain when we took him down to just the ankle splints. Therefore, in agreement with his physios, and of course desperate not to injure him, we are making the change very gradually. He is doing some standing at home in just the ankle splints, and using them in physio sessions, but still wearing his full splints when out and about and particularly at school.

The most exciting achievement of the week came on Friday, exactly 3 months since his SDR operation, Daniel WALKED all the way round Cheltenham town centre. We took his wheelchair with the intention that he would just walk the length of the shopping arcade and then hop in his chair for the rest of the trip. However, he wanted to keep going and going, and refused to get in his wheelchair at all (so Lucy enjoyed a ride around town!) You can see from this clip how much more confident and fluent his walking in his walker has become.

 

He hugely enjoyed the independence of looking round M&S, deciding which way he would go and what he would look at.

Admittedly he did end up flat on his face at one point, and was really tired towards the end, but he did manage the whole trip starting and finishing at our car without getting in his wheelchair at all. It really brought home to me how much he has achieved in the last 3 months.

Tomorrow we return to the full physio routine, and Daniel returns to full-time school. That should be challenging, but I look forward to what he might achieve in the next 3 months....

February already.......

The time is flying by, and I can't believe that it is already 11 weeks since Daniel's SDR operation. The last couple of weeks Daniel has continued to work hard at his physio, and usually with his gappy smile much in evidence!

We have all been struck down, to varying degrees, with the bug that has been going round the children's school. However, Daniel has so far managed with only one day off school, and one missed hydrotherapy session, and has otherwise carried on. We are keeping our fingers crossed that he can have a good rest over half term, and manage to stay healthy. After half term we are hoping that he will go back to more or less full time at school, which will bring even more challenges in terms of time management.

The video below was taken this weekend, and shows two really big indications of Daniel's progress. Firstly, on Friday he started to be able to stand UNAIDED, and managed over FIVE SECONDS!! (In the clip below he only does about three and a half seconds but he did manage more in other attempts!) This is something he has never, ever done in his life before; before surgery, as soon as you let go of him, he would just fall over immediately! We were all seriously excited by this new achievement! In the second half you can see him doing well at one of the balance exercises from the home exercises. This shows how his hip stability is improving, as well as his strength in general.

So, since he is getting stronger, and following the advice from St Louis, being the mean parents that we are, we have made Daniel's life a bit trickier still! We are now trying him without his tall splints and just with the smaller ankle splints. These give his legs less support and the change has temporarily made standing and walking harder for him. However, if he can manage without the tall splints, it should allow him to build muscle strength in his ankles and calf muscles now too.