Thursday, 21 March 2013
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!
Sunday, 17 March 2013
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.....
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.
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.....
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| Remembering those happy times in the siblings' playroom |
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| 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.
Sunday, 17 February 2013
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.....
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....
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.
Sunday, 3 February 2013
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.
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.
Monday, 21 January 2013
Snow......
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....
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.
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:
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.......
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!)
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....
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.
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....
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| 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.
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