Today Immy has amazed us. This morning I left her for few moments lying on her tummy in the front room watching TV. When I got back she was sitting up on the sofa (she had got there by herself). So I put her walking frame down right in front of her and popped out again – came back to find she had stood up and turned round 180 degrees ready to go. So I wandered off again on another pretext, to find her striding out of the room having manoevred herself away from the sofa and across the floor. Next thing, she was in the kitchen all ready to get into her static chair for lunch. This is a first!

Then she went with the Brownies to learn circus tricks (no idea what she did, but she’s getting a new badge for me to sew, apparently). She was certainly up on her feet for some of the time. Then when she got home she walked for 15 minutes without a break (for the first time) on her treadmill, with the final minute at speed 1.2 (km/hr?).

Then she wheeled herself all round Sainsbury’s in her wheelchair with no assistance, and came home demanding to stand up to watch TV. Phew! This is an unusual day, but it shows what she can now do!

She uses her walking frame in school every day now and I almost never lift her anymore (my back is so much better) – I “walk” her everywhere!

Since I last posted we went to the SDR party in Daventry, attended by Dr Park, some of his team from St Louis and over 100 children pre and post-SDR from all over the UK with their families. It was a moving experience and Imogen burst into tears after having an opportunity to dance with Dr Park, her hero, and being told that he thought she was making good progress:

We have also been putting into practice (with a vengeance) the things we learned in Perth with Mike Poole, a physical trainer who has worked with over 100 children with cerebral palsy pre and post SDR (I mentioned this in the last blog post). She now does at least half an hour of strength training most days, some days longer.

Here’s Immy walking for the very first time using the bars Bruce and colleagues made for her new treadmill. We’re amazed she’s managed so well with this.

https://www.youtube.com/watch?v=1cYFtGALcYw

Here she is practicing her standing balancing – we do this 10 times each morning!

https://www.youtube.com/watch?v=_sy7sNHVS6A

There are a few other videos on my Youtube channel too.

When we were fundraising I thought we were busy, but we’ve been almost as busy since then too. Another year, and maybe things will settle down a bit…. but you won’t believe that!

AND – I will DEFINITELY update this website properly, getting rid of the “Donate now” button and changing things round a bit. I am so embarassed that we’ve done nothing on it in the whole of the past year apart from adding a paltry number of blog posts. Will do better!

Immy’s progress has been slow and steady through the winter months. The cold weather always tightens her up and slows her down, and this year has been no exception – although the effects of the cold are far less severe post-SDR. She’s gradually getting stronger and is now using her walking frame routinely in school even if I’m not there. Each day begins, for her, at about 6.45 – we aim to have her breakfasted by 7.30 and then we try to fit in 45 minutes of stretches and strengthening exercises before she heads off to school. We usually park in the playground and she walks the 50m or so round the hall to her classroom. She has a physio session twice a week during the schoolday, and every schoolday includes at least a couple of walks and standing in her frame. After school we try and fit in another half or an hour of walking and physio.. and I’ve just involved a personal trainer who will work with her for an hour after school, one day a week to start with. Weekends are packed with physical activity – swimming, walking, training and cycling (especially now Immy has her fab new Tomcat trike). We now have a treadmill, the trike, total gym, iJoy (horse-riding machine) exercise balls, mats and benches as well as the walking frame and powered wheelchair. We can just about move round it all!

I’ve realised, belatedly, that it’s simply impossible to do an hour of training, and make tea, and homework, all at the same time!

We’ve just spent a fortnight in Scotland, with MP Fitness, working on Imogen’s core strength and stamina. Here’s a clip of her sitting tall, without her feet on the floor, and showing excellent balance and concentration.

It was excellent and Immy is definitely a good deal stronger as a result. Huge thanks to Mike for giving us all another kick up the behind (although, to be fair, we weren’t being lazy before!), and a renewed belief in what Immy can achieve if we all work hard on the right things. We’ve come home with a new exercise routine, rather similar to what any of us would get if we went to see a personal trainer and needed to improve our core strength. We have also realised that she needs to wear her splints for walking to avoid damaging her feet and legs. We’d not been wearing splints up to now, not just because we are lazy, but she actually finds it harder to walk in them. Anyway – now she has her splints, plus some flashing Skechers shoes to wear over them and is very happy. Her walking is stronger now so she can tolerate them. You can see her in this clip walking holding my hands, and you might just see the shoes flashing! She wasn’t able to do this until the last week or so without her legs giving way as they do on one occasion in this clip.

This morning she surprised Bruce and I again…. She almost got onto the sofa by herself. And she is clearly doing reciprocal crawling, which she’d never managed before SDR. Getting onto the sofa is something we all take for granted… look how hard Immy’s working here!

Finally here’s a clip showing how strong Immy’s legs and tummy are getting. Here she is pulling on her dad’s hands to stand up, and then taking steps backwards. This takes a good deal of strength adn coordination. I’ve also done her hair by this point, unlike in the previous scarecrow video!!

We are sending videos and measurements over to St Louis to decide whether Immy needs to have that tendon-lengthening surgery that we postponed last year. I think she’s tight and will benefit from it, but they need to be sure that she won’t achieve the same thing over time through stretches. We are likely to head back over at the end of May again, which will also serve as a 1 year post-op review.

Huge thanks once again for your support – the fund you have helped us build for Immy have paid for the bike, the treadmill, the therapy in Scotland, it will pay for the personal trainer and our return trip for tendon-lengthening. I’m horrified to think of where we’d be had we not heard about this amazing surgery and all pulled together to make it happen!

Lots of love to you all xxx

I can’t claim that there have been any dramatic milestones since my last post a couple of months back. The colder weather and viruses around have made Immy a little less flexible than she was in the warmer summer months – this has not surprised or concerned me as it happens every year and I knew this would be no exception. We need to focus extra hard on her stretches – which we spend 20 minutes doing, morning and evening without exception. As well as these we add in as much time as possible (40 mins preferably, before school and in the evening) of strengthening exercises – tummy crunches, bridges, leg-raises… all the stuff we all need to do if we want to build core strength.

A fantastic local retired paediatric physio comes into school for a private physio session once a week and does some amazing work with Immy – she’s always so strong and flexible after these sessions. My wonderful mother-in-law (also a physio) drives an hour and a half over from West Wales most Fridays for another in-school session. Until a fortnight ago Immy has also had twice-weekly physio on the NHS – that’s now back to once a fortnight so I need to increase the private input she will get over the next few months to compensate. We also fit in at least one swimming and cycling session each week, and I try and go into school as many afternoons as possible to do some physio and walking along the corridors or outside with her friends.

… As well as trying to hold down a part-time job and keep the rest of the show on the road..

However, the improvements are still coming. Her stamina is growing – on Saturday she walked around 200 metres almost the full length of Cathays Park without a sit-down. Then she did manage another bit of walking around the museum soon afterwards. She can now stand up and lift her frame slightly to change direction, and is starting to show signs of coping with the front wheels taken off their fixed setting. This is our next milestone – to be able to steer the frame, and take herself where she wants to go.. It could be a few more months yet as she’s never really figured out sideways balancing in her life – she doesn’t automatically stick her leg out to the side to catch herself if she falls sideways. It’s a steep learning curve.

She’s also more stable and secure on her walking frame – to start with she’d let go with her right hand and was in danger of falling flat on her nose if I wasn’t watching like a hawk. Now she will keep holding on and her legs just bend under her if she’s struggling (much safer!) – this is down to improved upper body strength. Her manual dexterity has also improved noticeably – pen and fork use, use of her right hand etc. And academically she’s doing well too – the speech and language expert from the council came in recently, and was so pleased with Immy’s progress she took her in front of her class to congratulate her. Whereas the past couple of years Immy has had to do a lot of her school work out on her own in the corridor with her 1-on-1, now she spends almost all of the time in small groups working with her peers on similar tasks. Previously, lack of confidence and feeling out of her depth would cause her to have giggly patches and distract other children, but at the moment she has that under control and we’re on a positive spiral with her. She does have particularly encouraging and inclusive class teachers this year, which I am sure is helping too!

Here she is after walking nearly 200m in Cathays Park – still strong enough to pick up her frame and try to move it to the side.

And this is a better quality video showing something that we have been working hard on for months – Immy learning to get out of her wheelchair on her own and get onto her walking frame (or the sofa, or loo or whatever). For me this is the really big goal – independent transfers. It would be the difference between being able to go to town with her mates and needing a full-time carer as an adult. We’re getting there!

We’re also starting to put the money raised to good use now. We’ve already bought an iJoyride – a horse-riding simulator thing that helps Immy’s tight adductor muscles, helps her rotate her hips and work her tummy, glutes and core muscles to stay upright. She says her tummy hurts afterwards so it must be doing something! We’ve just ordered a new trike (a Tomcat) as she’s pretty much grown out of her old one – and we’re ordering a treadmill for the days when outdoors is not so inviting! Where we’re going to put it all is a very interesting question. I thought we had a big house but it’s quickly filling up with kit. We’ve also booked a fortnight’s intensive physical training sessions in the Feb half term with Mike Poole – a PT in Perth who gets great results with post SDR kids.

It’s a long old road, but we’re slowly getting there. Immy is working really hard, and cheerfully too. Thank you all, once again, for your support.

… and I will, very soon, get this site updated properly to remove the fundraising element and put some more post-op stuff up! Sorry!!

Imogen continues to make astonishing progress. Every week she gets stronger and able to do something (albeit small) that she could not do before, or walk a little further.

In my previous post I noted that Immy had taken her first independent steps in her walking frame on her 7th birthday. She is now able to walk the full length of our house and garden, up the path, around an entire gallery in a museum, halfway round the path in our little local park, into the changing rooms at swimming, out to the pool barefoot, back in after swimming etc etc. Her stamina and control are steadily improving.

and how’s this for a bit of determination?!

The progress was largely as a result of some very serious hard work over the summer holiday. We took literally what Dr Park told us in our final appointment with him – that she needed to “walk, walk, walk” so we had her marching up and down between activities, either in her walker, or with us supporting her shoulders, pushing herself upstairs sometimes (with us holding her for balance obviously) – all in aid of getting her legs stronger and stronger day by day.

Now she’s back at school it’s a bit more tricky to fit so much walking in, but she has a devoted Grandma (who also happens to be a physiotherapist!) who comes over most weeks to do some stretches and walking in school, also another physio we pay privately and, at the moment, two NHS sessions a week – so, with me popping in on the other days she does manage to do some walking each day at school. She also cycles once a week and swims, and we’re planning to gradually add more, eg horseriding etc.

But the best thing of all for Immy is being able to walk outside in “afternoon play” with her friends. She is so proud and excited about this as you will see in the photo:

We’ve still a long way to go to achieve any sort of independence. She still cannot quite get onto the walking frame from her wheelchair without support, and it’s harder to get back into the chair (though we are working on it). She also has all four wheels on the walker fixed in a straight line, since, between steps she still relies on it for balance. The next stage (possibly still months away) is to release the front two wheels so she can learn to steer herself. Different surfaces also pose different challenges which need to be understood.

The exciting new step this week is only a seemingly very small one, but she is starting to be able to push herself back up again when her legs crumple beneath her after a long walk.

We are in good company – there are hundreds of families around the UK, and thousands around the world, who are also trying to fit in daily physio sessions, and strength-building activities, who’ve turned their homes into mini multi-gyms, and whose children are, for the first time, on an upward spiral towards greater flexibility, strenght and independence, now that the spasticity in their legs has been removed.

I’ve been drawn in (you’ll not be surprised to hear) to the campaign to get this liberating surgery carried out more widely, funded and fully supported by the NHS in Wales.

We were very fortunate to get a cancellation block of therapy at the Bobath Children’s Therapy Centre Wales – I think this is Immy’s fourth block and it ranks up there with her first in terms of achievement.

After her first block she learnt to sit up on a bench unaided. At this one she took steps for the very first time, on her 7th birthday, barefoot and using her walking frame for support. This was a tremendous achievement for her – 2 days ago now – and I still can’t quite believe it. Huge thanks are in order, firstly to Dr Park and his team, then to the wonderful Sue and Belinda at Bobath who’ve worked so hard and carefully with her this past 3 weeks on building strength, flexibility and control around her pelvis and shoulders – I know that the Bobath therapy has had a huge part to play in getting her walking this week! And of course, to you all!

It is absolutely the case that she would NEVER have managed this pre-surgery. And it’s just the start. I’ve attached a little video – it’s not the best she can do by a long shot. In fact she just walked across the floor again for my parents when we arrived here this evening. I’ll post some better ones when I have them.

She took 20 steps on Wednesday, 15 or so yesterday and another 25 or so today. So it wasn’t a fluke!

She’s also been working on shuffling down out of her wheelchair, leaning forward to grab the walking frame and turning herself round to start walking. This is at an earlier stage, but, if anything, it’s even more exciting!

I’ve also totted up the funds that have come in from various amazing sources since we went to America – the coffee morning in Llandeilo, my amazing nieces’ coast-to-coast cycle, and a host of other events, some of which I;ve also posted about. The total has just passed £70k and there’s more still to add! I’m now starting to spend the money in earnest, small pieces of physio kit, cycle therapy, physio etc – and we’re looking to book a few days of therapy in one of the UK’s specialist places.

We’ve been home more than a fortnight now, and everything is going so well. Everyone who’s seen Immy up on her feet has been amazed, from her consultant paediatrician who was wide-eyed and clearly thrilled, to family members and friends everywhere. On her second day back in school she “walked” over the finish line in sports day in her walker, and yesterday I managed to “walk” her in and out of the swimming pool and stand her by the side of the bath to get her dry. None of these things would have been remotely possible before our trip.

Here’s a link to the latest video of Imogen walking in her frame:

When you compare this to how she walked beforehand (with and without splints), you’ll see the difference without too much difficulty – her legs already look more muscular and she’s so has so much more freedom.

Over the past fortnight she’s definitely become stronger through her legs and arms, and is inching closer to the point at which she can move independently in her walking frame. I think we’ve started to realise the scale of the challenge ahead though – so many of her muscles are weak and she lacks coordination and has a lot of muscle tightnes from 7 years of unbalanced use. However, it’s motivating to work hard when you can see progress, and believe, as we do, that the progress she makes will stay with her. Fitting the extra physio into the school routine is proving tricky – if I thought I was busy before….

It is just so exciting though!

and I can’t thank you all enough for your support that got us here!

The marvelous Michael (Mad Mike!), her main physio here, also measured her today and there is completely no sign of any spasticity at the moment in Imogen’s legs. If we keep getting her walking and walking every day, then hopefully it will not return. What we have to work on building her strength and coordination, and stretching muscles that have become tight after 7 years of unbalanced use.

Although we’re missing everyone at home, there’s a big part of all of us that doesn’t want to leave here – it’s been a little oasis in our lives – a time of progress and achievement, surrounded by people who believe in Immy and what she can achieve, who want to help and have all the facilities you could ask for to do so. We’ve met so many other wonderful people too, in the church we’ve attended, the hospital and the hotel as well as just around the town.. Clearly it hasn’t come cheap, and it’s only down to all of you wonderful, generous, amazing people back home that we can be here!

Having said that, it will be wonderful to see you all in just a few days! xxx

We’re seeing improvements all the time. We’re 18 days post-op now – 6 days after the last video was posted on YouTube:

and now she’s progressed from here in that we can kneel down behind her and hold her hips straight (she tends to rotate them a bit because she’s weaker on one side which makes her start stepping sideways) and she can step forwards from there. I’ll post another video soon.

Although the spasticity has completely gone, 6 years of under-using some muscles and over-using others make it difficult for Immy to place her feet in the right places as she steps. For example, although her quadriceps are quite strong, she’s not been used to using them to walk so tends to lift her whole leg at her hip and bring her knee up, but hasn’t yet learned to kick her shin out to step forwards. We’re practicing scoring goals to work on this one (and authorised kicking of family members!). Also her abductor muscles (outside leg from hip to knee) are very weak so the adductors (inside thigh from groin to knee) take over and her feet stay very close together and still occasionally cross over. She is also weak in her arms and upper body which means that she “crumples” at times, especially when she’s tired. It’s so much easier to see which parts are weaker and stronger now that the spasticity has gone Spasticity groups muscle movements together and makes it hard to separate the effects of different muscles. It is also hugely tiring and wasteful and pernicious, in that the harder you try the worse it gets – it is GREAT to be rid of the spasticity. If we achieve nothing else I’d be grateful for this!

For example it has been fab to hold Imogen’s arms and watch her feet walking along the bottom of the swimming pool, heels down and legs and back straight. She couldn’t do this before surgery – her toes would point and her upper body fold inwards so that she ended up with her head underwater (not ideal!). she’d spend all her time in the pool if she could!

We’re also having lots of fun in our spare time. St Louis is a fab city with loads to do for children. Opposite the huge hospital complex is an enormous park that literally goes on for a few miles. It has a science centre, several museums, a huge zoo and loads of other attractions – most of which are free entry. We’ve been to the zoo 3 times now and the science centre and big planetarium. Owen is in a “space” craze as a result. Bruce bought him a book, probably aimed at about a child twice his age, and he now knows, for example, which are the solar system’s four rocky planets (he was testing me on this earlier today) and is starting to get his head around the concept of gravity and hence weightlessness in space. It’s such a joy watching him learn!

We’ve now also hired a car so we can explore a bit further afield. Today we went to (also free-entry) a rural family spot called Grant’s Farm – historic home of the Anheuser-Busch beer family (Budweiser etc). As well as farm animals they also have some more exotic ones, most exciting of which are the two elephants, who treated us to a show – with dancing and spraying the front row (us) with water from a bucket!

All of our living and general sight-seeing expenses here are coming out of Hurrell family funds, and not the Immy Finds Her Feet Fund – which has so far paid for medical expenses, flights and the accommodation only. Immy is very likely to need tendon lengthening surgery in the future, and the orthopaedic surgeon here has a particuarly good technique for it, and is used to working with SDR patients so we’re grateful that there’s enough money in the fund to afford to do this (would only require a brief stay). It’s also becoming clear to me just how much hard work we’ll need to put in now, and how we really will benefit from supplementing the NHS service with our own private physio.

Better hit the deck now – it’s Trinity Sunday tomorrow and the patronal festival of the church we’ve been attending here – they have a picnic in the grounds after the service and I’ll probably sing the Tchaikovsky “Holy Holy Holy” with the choir in the service (so need to be there for 9.15 am!)

Night night all xxx

It’s been baking hot here today too – hotter than Cardiff I imagine… 100 degrees and very humid so VERY sweaty. This has been the first day without a hospital visit, and we’ve enjoyed having the time to ourselves. We went to a place called City Museum, which is rather a misnomer – there’s absolutely nothing museum-like about it. It’s a great big themed adventure/softplay place. Actually I can’t think how to describe it. Think artificial caves, aquariums, fountains, tunnels, slides and steps made of concrete, ceramic, thick wire and welded metal, every surface decorated with tiles and statues and metalwear of all sorts (the curved outside wall of the “restrooms” was decorated with hundreds of upside-down bread tins. Not particularly great for a very nervous 4-year-old, though he did get a bit more confident as time went on, thankfully. I went on my first Ferris Wheel ride in 30 years with Owen too. The Ferris wheel was on the roof of the building (12 floors up, along with an old bus that was overhanging the edge of the building).

Earlier this week we also managed to take a trip to the TOP of the St Louis arch which is also phenomenal. Built 10 years before I was born it still looks futuristic today. The little pod-car lift to the top was an experience (5 little seats in a small spherical compartment) and the views were amazing. The St Louis zoo, which we’ve now visited twice, is fantastic too – stingray stroking and feeding, an amazing reptile house, all the big animals you’d expect in a zoo and stacks more.

Anyway, I’m sure you don’t want to hear any more about our sightseeing. What of Imogen? Well, we’ve noticed an increase in her standing and stepping strength again today. Yesterday we ended up trying to make a decision about whether she should also have some tendon-lengthening surgery this time (this Tuesday!!) or not. Bruce wanted us to have it and get it over with, I preferred to wait, so we were rather at loggerheads about it.. and then an email came from the doctors saying that the priority at the moment was building Imogen’s standing strength and lengthening can wait. That was a relief for me (confirmed my view as it happens), and Bruce was also happy that the two doctors had given us joint advice..

… so we concentrate on lots and lots and lots of walking and standing! We’ve had her up out of her wheelchair every few minutes today, walking and standing and pushing through her arms in her walking frame. She is certainly stronger than she was a few days back, so we will keep on doing more of the same all over the long weekend. She’s being incredibly cooperative and brave about the whole thing – it’s astonishing really! But she was totally exhausted tonight. There’s no physio Monday as it’s Memorial Day public holiday here and we’ve been invited out for lunch with a family we met at the church we attended the first weekend near the hospital. The people at that church (Trinity Episcopalian) have been incredibly friendly and welcoming. The deacon came to visit Imogen in hospital and showered us all with gifts and vouchers and membership cards for local attractions. I got to sing at choir practice last week and go out for a meal after compline. Wonderful!

Owen is enjoying himself, particularly now that Immy is back with him at nights (he really really missed her – that was a problem I’d not anticipated!) and now we have a few more things to play with in the hotel rooms – our friends from the church here have lent us a Brio trainset and some books, and my Australian aunt sent some fab gifts.

That’s all for now xx

She’s been zooming about on a bike with her knees apart, feet flat, with smoother coordinated movements and taking some steps with assistance, again, feet apart head up – she’d never have managed any of this before.

Like all SDR patients, she has temporarily lost some of her core strength, but we can already see this returning and we’re pretty amazed really by how much she can already do only a week after surgery! Everyone is hopeful that this operation is going to be a real success for her! The big challenge for her (as well as increasing her strength globally) is to overcome the stiffness and weakness of her arms, which makes walking with a frame difficult. She’s not ever been very good at bearing her weight through her arms.

I can’t write too much more for now as we’re meant to only be on these computers for 30 mins at a time and I’ve been here at least an hour on emails. We’ve now got nearly 3 weeks of physio every day – a couple of hours round trip to the hospital, but the rest of each day is free for us to do as we like (though we do have to fit in stretches, strength-building and a bit of schoolwork!) There’s a huge park just by the hospital, with a fab zoo, museums and all sorts of other things. We went right up the arch yesterday, which was phenomenal. We’re going to end up getting a bit more of a holiday out of this than we normally get at home, which I’d not been expecting!

Immy is being fantastic – she’s motivated and working so hard, bless her!