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.

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....
 

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.......

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.

Christmas 2012!

This is just a quick update while we are in that funny lull between Christmas and New Year. We have had a lovely, quiet Christmas at home. Luckily Father Christmas (or 'Santa', said with no 't', as my children say, having obviously spent too long in America) did manage to visit, and the children were very happy. In fact, our night's sleep on Christmas Eve rivalled some of our worst in St Louis, as Daniel woke up at least 5 times in the night, because he was so excited! He was also full of cold, which didn't help.

The children have had lots of time to play with their Christmas presents, and generally adjust to being at home again. That said, in many ways it feels as if we have never been away!

Sneaky bit of physio while playing with his Star Wars present from Santa

Nice crossed legged sitting - he is able to manage about 10 minutes sitting on the floor again now.

We did give Daniel a day off physio on Christmas Day, but we have otherwise been doing the home exercises every day, and have also had one visit from our private physio, Jenny, this week.  Daniel is definitely getting a little bit stronger, and has now tried doing the kicking exercise with ankle weights on....

He has also been trying tummy crunches (small ones!), amongst other things.

The last couple of nights he has managed to wear his knee-immobiliser all night for the first time (we had previously been needing to take it off about 1am). The immobiliser alternates between legs, and holds the leg straight throughout the night. It isn't very comfortable for him, but he is tolerating it well now, and we can see the positive effect when we come to stretch his hamstrings in the morning.

Yesterday, Daniel was on the front of our local paper again. They had phoned us on Christmas Eve to see if we were back, and were obviously looking for a bit of a 'good news' story for their first issue after Christmas......

Today Daniel had his very first walk OUTSIDE! We wanted to do this before now, but the weather has been so terrible since we got home that we haven't managed it. However, today we seized a gap in the rain and he walked all the way round the outside of our house. It wasn't necessarily his best walking, but a milestone achievement nevertheless, and it also included the slope back up to the front door.

We have lots of friends and relatives coming to visit us over the next week or so, and we still need find time to fit in all that physio, so the next time I update it will probably be 2013. It's a funny thought that at the start of 2012 I had barely even heard of SDR, and I had certainly never heard of St Louis Children's Hospital! I look back on 2012 as a dramatic, but ultimately satisfying year, and I wonder what 2013 will bring. Happy New Year!

5 weeks post op....nearly Christmas!

The first week at home has been a bit of a blur, to be honest. In some ways it was lovely to return just in the final build up to Christmas, but it was also decidedly peculiar arriving back into school in the last week of term. Lucy went back to school on Monday (with a bit of a late start). She was delighted to go back, although exhausted (but then, being the end of term, most of her classmates were too!)

Daniel has not officially been back at school this week, but as ever it has been difficult to keep him away. He went in on Monday afternoon for his class Christmas party, and walked into his classroom for the very first time, to stunned silence from his classmates! This is him in the corridor, just about to turn right into his classroom and surprise everyone.......

He also went in just for the lunch hour on Tuesday - for Christmas dinner.  I had stayed with him on Monday for the party, but on Tuesday he declared that he didn't want to go if I was going to be there. He thought he might hurt my feelings by saying so - he was wrong about that!! I happily handed him over to his more than capable Teaching Assistants and had a whole hour to get some jobs done. Then on Thursday- the last day of term- he went in at the start of the lunch hour and stayed for the afternoon. When we arrived he walked all the way from the entrance of the school round to his classroom! Being the lunch hour there were quite a lot of people about and he had several sets of clapping from groups of older childen, plus staff coming out of the staffroom to see him, the ladies coming out of the office etc. All in all he was clearly chuffed with himself. When we reached his classroom, I then lifted him into his wheelchair to go off to the Dining Hall for his lunch, and I left!

To be honest I have been extremely grateful for those few hours for which Daniel has been in school because he has otherwise been at home all the time, and we have of course needed to get the physio regime started, which has left a VERY small amount of time to get ready for Christmas! Please accept our apologies if you usually receive a card from us and haven't this time.

Our other difficulty has been that Daniel in particular has been extremely jet-lagged. He has been waking up just as Rich and I have been about to go to bed (sometime between 10 and 11pm) and has then been awake until at least 2am! This has been depressing for us, when we have still had to get up in the morning, especially once Rich returned to work mid-week. This photo was taken at midnight on Wednesday night, when I ended up bringing him downstairs, so he was sitting on the sofa watching the Disney Channel. The photo does allow us to celebrate the lovely relaxed legs though...

About 2 hours after this was taken, when he was back in bed, he was sufficiently bored that he managed to wobble the second front tooth enough that it finally came out (as you might spot in later photos!)

Daniel has otherwise been working hard in his sessions with his physios (currently he is having 2 sessions each week provided on the NHS and 2 private sessions). The major focus at the moment is on building strength, particularly in his trunk.

We have also worked hard at the home exercises and have enjoyed watching the tiny improvements we see all the time. This photo shows today's new achievement...

We have continued to try to get him to use his walker round the house...

This week he has started to be able to lift his walker a little to turn it, which is more progress. It takes quite a lot of lifting to make a 90 degree turn and we are still helping with that but he can now lift it a little and adjust his direction, which is great. Eventually we will unlock the front wheels so they swivel, but he is not strong enough for us to to do that yet.

We continue to work on teaching him to transfer from his walker to his gamma chair, to sit at the table etc.

Daniel is not experiencing much pain at all in his back now, unless he happens to be moved suddenly or to sit a long time in the same position, eg in the car seat. His back is healing very nicely. In this photo you can see the main SDR scar (the dip in the middle is where the vertebra was removed - this will take about 5 years to re-grow). You can also see the smaller scar (at the bottom of the photo) from the epidural.

His legs are also starting to heal, although he is still getting some pain from his hamstring surgery, especially when we try to stretch his legs. In fact we are still struggling to get anywhere near a decent stretch, particularly with his left leg. Of course the hamstring surgery was done nearly 3 weeks after the SDR, so it's not surprising that it is behind in the healing process, and hopefully the stretching will improve when he is in less pain.

So, that's it for now. I will update again in another few days, but in the meantime HAPPY CHRISTMAS to everyone!