2019, our year of travels 😍

End January 2019, we left the UK to travel the world (yet again, against our ortho's blessing who, despite not having any suggestion to make regarding Jonas's knee/leg/gait, felt he needed to be seen regularly).

We climbed everything we could to give Jonas's clubfoot a good stretch, starting with the Eiffel Tower, the Great Wall of China, a few Japanese ancient gardens, waterfalls in Thailand, wandered about Melbourne in Australia, before finally making our way to Canada, where we've decided to settle down.

During this blessed time, life happened and Jonas turned 3.

He overpowered his brace and we kept losing screws. We first tried to glue and tape the thigh piece and the spiral together (the small Thai island we were on didn't have much to offer in the hardware department...), but eventually stopped using it altogether.

Though I was still worried about his leg/gait, one thing that brought me joy was to look at this perfect little foot: 

During that time, we used whatever we could to stretch his foot, a half-folded picnic table, slides, a big rock, etc.

And everything worked 😁

Adjustments

Following our harsh check-up early November, Jonas and I took a drive down to London to see Sam Walmsley at the London Orthotics Consultancy clinic in Kingston upon Thames.

It was an extremely long day for us, 4 hours' drive to the appointment, then back up the road the same day (adding in some traffic jams...). We were lucky enough to meet a new friend there and Sam did an amazing job with the brace adjustment. He reduced the abduction force on it and did a full check-up on Jonas's foot, throwing in some new insoles to support the formation of his arch and try to counteract the "knee collapse", as I call it.

Jonas also went back to the osteopath, who pointed out that Jonas showed signs of valgus in both knees and that the muscle loss in the left leg could be the reason behind his new and unbalanced gait. He also said that if Jonas's bones had been reset even just 1 mm off their normal position, the deviation caused over the length of his tibia and fibula would likely affect his gait. He gave us some exercises to do to strengthen his leg, but did say those would be more suited to older children and to just try and see whether Jonas would be able to do them (the answer is no... 😔 )

Thankfully, between the brace and me stretching his foot manually at night, Jonas seemed to regain his flexibility.

The day our world turned upside down...

On 17th September, Jonas broke his leg. We were driving around and the kids were getting a bit too agitated in the back. We saw a playpark on the side of the road and decided to stop to let them run free, before heading home. Unfortunately, they didn't make it to the slide. The entrance to the playpark was nothing else but a cattle grid!

(My husband's foot... A toddler's foot
had absolutely no chance)

I let the kids out of the car just a few meters away from the entrance of the park and told them to go for it, whilst I got a coat from the boot. From where I stood, the grid was invisible, I heard screaming, turned around and saw him on his back. At first, I didn't even realised he was trapped. I rushed to him and got him out of the grid, hoping that he'd just got a big scared and was too tired to calm down.

Obviously, that would have been too easy and we ended up in A&E. An X-ray showed that he'd fractured both his left tibia and fibula, right below the knee. It felt like being punched in the stomach. What else could go wrong?

I was told he'd need to be casted for 6 weeks. I explained to the A&E team that he had been born with left clubfoot and would need to be cast accordingly, with his foot in abduction and dorsiflexion if possible. 

They got a nurse to quickly put a back-slab on his leg and she casted his foot in supination and plantarflexion... pretty much the opposite of what I'd carefully specified. I ended up emailing our consultant for help at 10.30 pm on a Sunday night and was lucky to get a reply back within an hour. She'd sent me her secretary's phone number and requested a call first thing on Monday morning to set up an appointment. We came out with a brand new red cast.

 

Jonas was in cast for 4.5 weeks. He learned to crawl again and I got a pretty good arm workout everyday 😅 He also found out after a few weeks that he could walk on it just like he would on his brace and would just start dancing at any occasion.

When the cast came off though, another X-ray was taken, which showed that the fracture was still healing. Our consultant decided not to recast, but told us to be careful and that Jonas wouldn't be weightbearing straight away. I asked whether or not he could go back into bracing and was told "I don't see why not."

It took Jonas about 8 days to pull himself up to a standing position and 2 more days for him to start walking on his own. 

Worryingly, he had lost a lot of muscle mass whilst in the cast, and his gait had been affected, he would collapse his knee inwards to an awkward position when walking. He'd also lost flexibility in his ankle and I was too scared to stretch, in case his bones weren't fully healed and I hurt him. I've learned a lot about clubfoot, but knew absolutely nothing about broken bones which left me very uncertain.

We met our ortho again early November to check on his fracture. She didn't ask for an X-ray this time and a consultant from another hospital attended our appointment. Watching him walk, the visiting consultant said it was to be expected, that after such a serious fracture, 30-40% children have the same issue which usually resolves within a few months. Our consultant first said that obviously his gait would be affected and he would need a few months to get back to walking normally, before starting to blame it on the DTKAFO. Suddenly, I was told that Jonas shouldn't be in an over-the-knee brace after such a fracture, that it applied too much force on the repairing bone and that "that guy in the US" should know better than letting him use it without adjustment. I was in total shock.

I spent the whole appointment listening to both consultants talk over my head. When I tried to talk, I was told: "You probably have loads to say, but... really... We're just observing." I had tried to tape Jonas's knee a few days before the appointment. The answer to that was: "Your approach to healthcare bemuses me!" (which REALLY didn't sound like a compliment...)

All in all, the appointment went from bad to worse and I left totally deflated and angry for the way I'd been talked to. 

All I care about is for my son to receive the best care possible!!! I've made my choice when it comes to his clubfoot and have never looked back. I was hoping that we'd finally reached some kind of compromise at our August check-up. That day, she told me that her main problem with it was that it "keeps his knee bent at all times". What better way to prove her wrong than to get Jonas to stand tall in it? She had looked at me put the brace on him and watched him walk with it on, then thanked me for the demonstration. I thought she was finally interested and had kind of made peace with the fact that we were getting good results with it. I didn't expect her to recommend it, but was at least hoping that she was finally observing it with an open mind. 

Well, in November, as she was talking over my head to the other consultant, she actually said: "The problem is how the brace keeps the knee bent, I mean, the mum says it doesn't, but, you know..." There and then, I felt I'd heard enough.

As a parent, we put so much trust in our doctors and their teams. And, to be honest, it's only fair! They've studied for years to get to where they are, they know their stuff and I wouldn't question our ortho's skills. I know that, when it comes to clubfoot, she is the best in the country, one of the best in Europe, etc. However, she doesn't know my son. She doesn't know our family, and she doesn't know how hard it has been for me to deviate from her recommendation to use the boots and bar.

When it comes to clubfoot treatment, I've come to realise that once correction has been achieved, bracing is up to us, parents. We are in charge of compliance, we are in charge of ensuring that our children will accept them as part of their life. We learn the shape, the texture and the feel of every inch of their feet, we know every little crease in their skin, we know the feel of their leg muscles and we do everything we can to maintain their feet's correction to the best of our ability. 

We'll read hundreds of medical articles or websites, if need be, watch a thousand YouTube videos, if we think they may help. We'll throw a bottle in the FB sea, if anything suddenly feels odd, and we'll turn to professionals to confirm or alleviate our fears.

A 10-minute appointment every 6 months isn't enough to see how clubfoot treatment affects our children's lives, it's not enough to assess our commitment to them, nor our determination to learn everything we can about talipes in hopes that our knowledge will have a positive impact on their lives.

I respect our ortho and am ever so thankful for her work and for giving Jonas such a smooth start in life, I just wish she would respect me for doing my job too. A job I wouldn't swap for the world.

Long overdue update!

Since Jonas got his new brace in April, I've not made time to update you on his progress. The thing is, everything was going like a dream for quite a while!

In May, I'd registered him for the Mini Manchester Run. He walked/ran 1.5 km and raised money for Manchester Royal Children's Hospital. He got his first medal and made us proud.

Over the summer, we enjoyed the hot weather and made the most of those perfect feet:

Bracing as usual for naps and nights (always with style!):

August came and our 6-monthly check-up with our ortho went so so well, I was buzzing for days afterwards! For the very first time, she showed interest in the brace and took me up on my offer to tell her more about it and to show her how Jonas moves with it. For the very first time, she talked about "Jerald Cunningham" not "That guy in the US"!

That's when we decided, after talking to Jerald, that we could stop bracing for naps and see if that disturbed Jonas's sleep. His first reaction was to DEMAND that I put his brace on, then when I said "But Jerald says you don't need it for naps anymore", he answered: "I want to talk to Jerald!!" 😂

After a couple of weeks, he did turn around and told me "I don't need my brace to sleep anymore!" So, we had a chat about talipes and what he'd gone through since birth. I showed him a picture of him in a cast, then his first set of boots and bar and explained that he won't need to brace forever, just a few more months. He's never complained since.

And I promised myself to be brave, once he outgrows this brace, we'll stretch and manage his clubfoot as best as we can without another night-time brace. We'd never needed to worry about it really, so why should I plan for the worst?

New brace

Once the decision to continue bracing had been made, we had to gather a few utensils before planning another Skype appointment with Jerald to take Jonas's measurements. Since we were looking to avoid the trip to the US, we needed a seamstress tape measure and calipers to get precise measurement of Jonas's leg, tibia and foot (length, width and thickness).

Easter came and went, soon followed by Jonas's second birthday. Needless to say that the boy was spoilt rotten with a day trip to a local petting farm and more presents he can actually play with!

His new brace arrived on 24th April. It looked soooo CLEAN!! I'd actually forgotten it was meant to be bright white, not greyish 😅. I was eager to know whether it would fit or not. It looked just as small as his current one and pretty tight.

I knew the plastic would obviously stretch but I wondered why the brace wasn't any wider than the other one. Due to the time difference and Jerald's busy schedule, I couldn't get a hold of Jerald straight away so decided to slip it on and see.

I struggled a bit and had to take away most of the padding Jerald had stuck to the lower spiral, but eventually found a way and the fit looked absolutely perfect. The brace is a lot stronger and easily got Jonas's foot to those 45° external rotation we were aiming for, whilst not bothering him in the slightest.

I took a few pictures and sent them to Jerald. 

A few hours later, I got a reply, saying that indeed the brace looked perfect, and I should get Jonas used to the new stretch by using the brace a few hours here and there over the next few days, before going for his normal nap and night-time wear schedule.

Ooooops... Jonas had been asleep for a good couple of hours then...
Oh well... From day 1, back at the end of November 2016, the brace became a simple extension of his leg, I guess the added stretch must not have felt uncomfortable to him, he slept through his usual 12 hours and woke up with a smile.

We've got a plan!

AT LONG LAST! 

This past month has been a rollercoaster! My mind has been doing laps:

- YAY we're done bracing!

- C'mon! You can't stop now! He's not even 2!

- But It's probably best for Jonas to stop if he doesn't need it!

- What on Earth are you thinking?! Brace for longer or he'll relapse?!

- But what if he doesn't?

- And what if he DOES!

- But his foot is PERFECT!

- Says every CF mum ever 6 months before their child relapses!

- Arrrrgh!

- Told you so!

- But...

- DON'T go there!

And obviously, Jonas was totally oblivious and far more interested in bouncing about like a bunny! (As you do...)

On 17th March, we had a Skype appointment with Jerald, another full check-up to check on dorsiflexion, external rotation, general flexibility and gait. As always, everything looked perfect, so we "only" needed to discuss getting the next brace or not.

The difficulty for us was that Jonas had been in boots and bar for almost 5 months before getting the DTKAFO. There's no way to know whether or not those 5 months matter or not for Jonas's future.

Typically, the DTKAFO/Cunningham brace is worn straight after casting until the child outgrows the 2nd brace around the age of 2. In our case, stopping now would mean that Jonas only wore it for 15 months.

There is absolutely no data on children starting the brace later as... hum... Jonas is one of the first few to have done it. And the little data gathered over the past 13-14 years by Jerald Cunningham really isn't enough to try and predict what will or will not happen to Jonas. Either way, as we know, clubfoot is an unpredictable condition so decisions have to be taken in the present, for the child's best interest.

Claire, the physio, and the local orthotist we met through her, didn't really want to share their opinion with me. They agreed that the Ponseti bracing schedule wasn't based on any research proving that 4-5 years of bracing was better than 2, but they didn't feel qualified to advise me as to what was best for Jonas, using the DTKAFO. Alex, the osteopath, felt that bracing longer in our situation and with our brace couldn't be detrimental for Jonas. Other CF mums I talked to privately were confident that whatever the decision I took, I would always find a way for him 💖

Talking to Jerald, I felt a lot lighter knowing that we were in good hands. Our current brace was definitely getting to the end of its life. Jonas was starting to get a slight red mark on the outside of his foot from the foot piece becoming too narrow and the plastic spiral hadn't held the reset very well over the last month and was back to being very stretched, after its patch up in February. Jonas had got so strong that it only held his foot at about 20° external rotation.

The low quantity of data on the Cunningham brace didn't bother me when we first got it, because, to me, boots and bar meant night time wake-ups with a distressed baby and spiraling into depression at the thought of tethering his feet every night for 5 years, whereas jumping into the unknown and trying this innovative brace was a way of getting my happy baby back and letting this bracing business take second place in our night-time routine. The threat of the ATTT surgery is always on my mind. However, the self-reported relapse rate with the C-brace is around 10% and according to Jerald Cunningham, casting is usually enough to stop it and reset the correction. Comparatively, to me, the Ponseti method felt a lot riskier.

This time, I don't have any date to lean on to. My husband and I just want the best for Jonas and there's no way to know whether bracing for longer or not will be beneficial to him. Jerald agrees with Alex that indeed, it can't be detrimental, and that's kind of as good an opinion as we can get, really!

So that's it, then, let's get the next size up!

1st Osteopath appointment

Soooo... On 14th March, I met Alex Green at Bolton Osteopathic Clinic. Jonas had first met him when he was about 3 months old and in full-time boots and bar. At the time, I was worried about his hips and knees and wanted to make sure everything was in order. This time, I wanted a new full check-up for Jonas and to discuss a post-bracing treatment plan.

Clubfoot doesn't stop at 5 years old. Clubfoot doesn't really care what age you are. And Clubfoot cannot be cured. Yes, some people are born with it and are lucky enough to simply forget about it as they grow up, because casting and bracing have been enough for them. However, it is thought that 30 to 50% children will end up needing a tendon transfer after 2 years of age (https://www.orthobullets.com/pediatrics/4062/clubfoot-congenital-talipes-equinovarus) and relapses after 5 years old do happen but don't seem to be typically recorded.

Dr. Ponseti agreed that clubfoot was probably genetic, but had this thought that maybe the gene causing it would "switch off" around the age of 4-5, once his treatment plan stops. After 2 years of reading other children's stories and talking to other parents, I simply cannot believe it. I absolutely wish with all my heart that Jonas's foot remains as perfect as it is now for the whole duration of his life. But since the resurgence of the deformity is thought to be linked with growth spurts and the boy grows like a weed, I intend on being proactive and on teaching him how to take care of his foot.

From the research shared on the Clubfoot Resource Facebook group, it seems that holistic treatments might be the way to go. We're talking of osteopathy, chiropractic, physiotherapy and taping, as well as e-stimulation. Because they look at the body as a whole, osteopathy and chiropractic understand the need for the full lower limb, from hip to toe, to be in perfect alignment with each other in order to maintain a clubfoot's correction.

I'm pleased to report that besides a slight tightness in Jonas's left hip, Alex found him in perfect shape, from top to toe! He was really amazed by the perfect shape and mobility of Jonas's left foot and asked to have a look at our brace. He looked properly mind-blown by it:

"It just all makes sense! 

You'd only need to sit and think about it long enough to come up with it!

It's genius!"

I told him about our dilemma, I was still very undecided, one of my fears was that we would continue to brace and cause Jonas damage in the process. I've read so many stories of children bracing till 4-5 with the boots and bar and relapsing within 6 to 12 months, that I came up with a little theory. A pretty unpopular one I expect, but here it is: what if bracing for longer was NOT the solution? What if it was, on the contrary, part of the PROBLEM? 60-70 years ago, when the Ponseti method was invented, it was thought that if you had a sore back (or ankle, or wrist, etc.), your best bet was to immobilise it, until it wasn't sore anymore. Nowadays, it is common knowledge that you should, instead, mobilise it as much as possible in order to strengthen it and prevent any further pain. In that regard, how does it make sense to immobilise children's feet for a full 2.5 years out of 5 years of life?

What if the brace acted like a back support? You're doing great so long as you wear it, but the one day you take it off and go lift up a couch you break your back? I just can't shake off the idea and it scares me.

That being said, our brace is totally different, being dynamic and with the way it attaches to the thigh, the spiral being shorter than the tibia, it offers a resistance to the child, engages the calf and ankle and, as it stretches the foot into the corrected position, it strengthens the calf and teaches the child how to best position their foot when active. I know all that. I do. I just needed a professional opinion on it and until now, nobody I'd spoken to had actually looked at the brace and the way it's made and given me an answer.

Well, Alex did. After studying the brace and looking at it on Jonas, he concluded that the way Jonas's foot is today and the way he can move it practically like his right foot stems from our brace, and that its dynamic design, he can't see it being detrimental to Jonas, if we brace for longer. According to him, since there's no way to predict the future nor whether Jonas is likely to relapse or not, be it in 1 year or 10, using the DTKAFO an extra year won't do him any harm. And he's happy to see us regularly to check up on his mobility and prevent him from tightening up.

What a relief!! At last, someone took the time to listen to me and answer my questions in all honesty!

Next step was our appointment with Jerald on 17th March. Just a few more days and we'd finally have a plan.

Still debating!

It's so tough!

I'm sorry for not updating you earlier! My mind keeps going from one option to the other:

- It's safer to brace for an extra year, then I wouldn't have to worry about a thing! But that's selfish isn't it? I NEED to make our decision in JONAS'S BEST INTEREST, not mine.

- Bracing can be so tough with the boots and bar for ex. and I really wouldn't want any child bracing longer than necessary for them. Jonas has easily accepted the Cunningham brace, within 2 minutes of having it on, he seemed to already have forgotten it was there. However, does it make it right to keep bracing after being told that he doesn't need to anymore?

I decided to ask around what other people's opinions were:

- friends and family are not necessarily well-versed in the subject, but seeing me worry about it, most seemed to "agree" that an extra brace would be/feel safer.

- the physio we see privately, Claire, is mostly interested in finding ways to strengthen Jonas's leg and she feels that maybe we would see even better results if Jonas didn't have his brace anymore as the strap running just above his knee has left a thinner imprint on his thigh. She won't comment on whether or not we should keep bracing, but does agree that his foot flexibility and mobility are both excellent.

Running laps in the kitchen!

- following one of Claire's suggestion, I met with a local orthotist. He'd never seen our brace and initially thought it was just a removable cast. I explained to him how it works and showed it to him on Jonas. He then watched Jonas walk and run with his shoes on, then barefoot and was really impressed at the way he seems to use both his CF and his non-CF equally, actually preferring to use his clubfoot when climbing stairs up. He then had a good feel of his bone alignment and checked his flexibility intently. I got a shock when he concluded:

"There's absolutely no sign of talipes left in his foot, his flexibility is close to his non-CF's and that's really amazing for a CF. The shape of his foot is also very similar to his non-CF. I can't help with the decision of bracing or not. However, I wouldn't have any worry whatsoever about him relapsing. If you did want an extra brace, I don't see the point of getting an over-the-knee one again, you could get a short one focussed on stretching the Achilles tendon, but as I say, I wouldn't think it's necessary."

- I booked an appointment with an osteopath next week for yet another opinion and will have a Skype appointment with Jerald soon to (hopefully) come to a final decision.

The face that makes it all worthwhile

Decision time...

The past week has ended in a blur of questions and uncertainties and we're kind of still savouring the feeling of knowing that everything is going so perfectly with Jonas's foot.

We got his brace back on Friday, all pimped up 😂 It looked so tiny! I hadn't realised how stretched it was. Jerald "reset" the plastic spring and added an elastic band at the side to prevent Jonas from stretching it back too quickly. He also added a layer of spring steel under the foot piece.

I was a bit scared to put it back on, thinking that maybe the extra stretch would bother Jonas after 4 nights of total freedom. He surprised me once again: absolutely unphased, he had a wee play with the elastic band before I put his PJs on, then went out like a light! Waking up with a smile 12 hours later. I feel he'll simply never stop amazing me!

My husband and I discussed our options over the weekend, between keeping the kids entertained, working and studying. It's such a tough one!

- I trust Jerald when he says he thinks Jonas could be fine if we stopped bracing now. I trust him when he maintains that 2 years of bracing with his brace should be enough to make our little one's feet perfect. However, Jonas has only been in the brace since the end of November 2016, that's only 14.5 months and I can't help wondering whether missing out on those extra months could mean that we're not as safe as if we'd started bracing with it straight after casting.

- Jonas is growing extremely fast, he'll be 2 in April but already towers over children older than him and despite the 3 years difference there is between him and his sister, I feel he'll probably catch up in height within the next year (he's only 12 cm shorter!). The big growth spurt between 2-3 yo scares me.

- The Ponseti recommendation is to brace till 4-5 yo, but all research done till now only ever involved a  2 year bracing period only, leaning that the decision to brace any longer isn't actually research-based.

We've decided to take more time and discuss our next step with more professionals before making our final decision.

Double check-up

What a week!!

Jerald Cunningham announced a few weeks ago that he'd be passing by London on his way back from Kenya where he was collaborating with CURE International: he travelled with his daughter with he aim of training/retraining a medical team to the use of his brace, checking-up on little patients he'd met a couple of years ago and fitting new patients.

The decision was easily made, we packed the kids up for a weekend to the capital. My almost 5-year-old daughter was desperate to meet Paddington bear so this was the perfect occasion!

Monday came and with it our appointment with Jerald and Sam at the London Orthotics Consultancy office in Kingston. The scariest part was "tubing it" with 2 young children, but I'm pleased to report that both Abigail and Jonas were absolutely perfect (thankfully - or not (I'm not too sure the secretary agreed) - they waited to get to the reception area at LOC to turn into crazy little balls of energy 😅).

Whilst we were waiting for our turn, we met a few people interested in the brace and chatted for a while about how well Jonas had taken to it and how well I felt things were going. To me, Jonas's foot looks pretty similar to his non-cf. It doesn't feel as dense and his arch isn't as high, but it looks, feels and moves like a normal foot.

Jerald watched Jonas walk (or should I say... run and bounce and stretch up on his toes?) and examined his foot. He was extremely pleased with it and particularly happy to see how well his arch has formed since October. He commented on the fact that he still shows quite a bit of external rotation/overcorrection, meaning that as he grows and things tighten up he should have enough of a margin for his foot to get to neutral but not relapse. He noticed that Jonas is getting to the limit of his brace capacity and decided to keep it so as to adjust and strengthen it the day after our appointment.

He had an important meeting right after our appointment and had to rush, but promised to be in touch shortly.

We got home on Monday night, tired but relieved. We still had to go to Jonas's 6-monthly check-up with our consultant on Wednesday and I really needed this boost of confidence. I just can't help it, I'm always scared to go to our hospital and meet our consultant for check-ups!

Well, we got there, Jonas had a wee play in the waiting area and we got called in. There was a bit of a surrealistic conversation about socks. Jonas had an orange sock and a blue one, which he was proud to wave at us "Socks socks socks!" he said. Luckily enough, our consultant wasn't bothered with the odd socks. Just as well as I simply can not store them in pairs! However, she commented on the fact that apparently, some people are so obsessed with socks that they IRON them???

I really need to ask: where do people even find the time to plug in their iron?? Mine only got out of storage recently and is only used for... Hama beads!

Anyway... let's get back to our check-up! Our consultant seemed really pleased with Jonas's progress and said that his foot looks better than expected based on what it looked like 6-7 months ago (very flat, with a risk of planovalgus). She performed a full lower limb check-up and also appeared satisfied with it. She was also curious to know about our check-up with Jerald on Monday and his visit to London.  I felt our appointment was very positive and we're booked to see her again in August.

I felt we'd had a very good week already and absolutely DID NOT expect to wake up to an email from Jerald this morning. After a short confirmation that the brace was on its way back to me, he stated that Jonas is close to outgrowing it and we are now coming to decision time:

- do we want to size up and brace longer?

or

- do we want to take a break (potentially indefinite) from bracing and monitor closely?

...

2nd Physio appointment

After a lovely Christmas and lots of squatting and stretching on our tiptoes, Jonas was in top shape to meet Claire again :)

We had our 2nd appointment with her last week and she was really impressed with the way his quads and calf muscles have developed in such a short amount of time. He no longer feels the need to step back when coming back up from a squat and the muscle definition in his calf has increased again. 

Our next step is to get him to learn to balance all of his weight on his left foot. He already does it briefly, when kicking a ball or holding onto something, but our goal is for him to be able to hold the position a bit longer and keep strengthening his leg.

This was once again a very positive appointment that confirmed that he's got great flexibility and motricity.

Claire suggested we start using a balance board with him. We don't have one yet and most models are too big for him so we've just purchased a yoga balance pad and expect to have hours of fun with it!

Starting physio

Since Jonas is now on 6-monthly check-ups, even though my mind and eyes tell me he's on track and doing brilliantly, now and again, I still freak myself out: I stare at his foot, try to stretch it, build it up in my mind that maybe it's not as flexible this time as it was last week or I look at his non-cf and feel that his feet look slightly more different from one another today than they did yesterday and obviously, I go into a panic about relapse. It usually only lasts for a few moments, then I take a step back, think about it and calm myself down, because I KNOW it's all going well! However, if you're a clubfoot parent, you know how draining that can be... Needless to say that I'd do anything to free myself from that fear. I decided that seeing a physio privately for a monthly check-up would be the perfect way to give myself a break.

That's why, in October, I approached a paediatric physiotherapist, Claire Irvine, at Manchester Neurotherapy Centre and enquired about her experience with CF children. One of her colleagues is also a Feldenkrais expert and I wanted to have her opinion too as I have been in contact with a mum who uses the Feldenkrais method to fend off CF relapse. 

After a first phone consultation and e-mailing back and forth a couple of times, we decided to meet early December for an assessment.  Claire asked me what I felt Jonas needed help with and I really had to rack my brains to actually find something to say: At 20 months, he was already a proficient walker, a pretty good runner, an experienced climber and the only thing that he seemed to be trying but hadn't mastered yet was jumping! (which my non-cf daughter only managed when she was 2-2.5 yo anyway!).

On arrival at the appointment, Claire and her colleague welcomed us warmly and were immediately impressed at seeing Jonas walk so comfortably towards the treatment room. Once there, we made ourselves comfortable and Jonas, flashing his nappy and bare legs, started to show off his mobility skills. Taking turns, they examined his feet, legs and hips and how he used them, they engaged him in different games spurring him to move this way or that way, to crawl, to get on his tiptoes, to squat, to climb, etc. 

"He moves in such a natural way! He keeps switching patterns! Look at how stable he is! That's really impressive, you'd never know he was born with clubfoot!" 

I was so happy! And so was Jonas! A full hour play with the ladies instead of his nap? 😂

However, they both pointed out that Jonas seemed to lock his knees when standing up rather than making full use of his quads, forcing him to step back to find his balance when coming back up from a squat. They suggested we add games to our routine where we get him to squat down low then stand up high on his tiptoes, the idea being to strengthen both his quads and his calves in the same move. They also found that his tibialis anterior muscle felt tight to the touch and suggested I gently massage it to soften it and make his body understand that it doesn't need to be.

I asked them whether they thought there was anything extra (apart from bracing) that I should be doing to pro-actively prevent a relapse. I asked about stretches and mentioned kinesiotaping. They agreed that stretches wouldn't do any harm and also recommended gently massaging his tendons to keep them supple. They looked very dubious about kinesiotaping though. According to them, he's doing so well on his own, discovering his body and the world in such a natural way, that they wouldn't want to mess with it. The most they would agree on would be to have a small strip of tape running under the metatarsal heads to increase his proprioception but neither of them felt it was really necessary.

I obviously showed them Jonas's brace and they watched him walk and crawl with it on to get a better understanding of how it works and what it does for him. They felt that it all made sense and were very happy to be given the opportunity to watch him and help us out along the way. 

FINALLY!! I feel that I have found someone local to me

that actually approves of our treatment choice

and really cares about him doing well in his Cunningham brace!

ONE YEAR ON!!!

(I vaguely remember something about a clubfoot?! Which CLUBFOOT?!)

On 22nd November last year, my husband and I met Jerald Cunningham over Skype. My husband was still uncertain about the brace, questioning whether we ever should question our orthopaedist and wondering why I simply couldn't just be happy with what the NHS had to offer us for free! After an examination of Jonas's foot, it stroke us that yes, his foot was brilliantly corrected, however, what we'd been told was likely to be a "fat deposit" on the top of his foot, was more likely edema caused by how tight the middle strap has to be for the boots and bar. An hour of talking to Jerald, listening to his answers to our numerous questions and looking at his brace finished convincing me that this brace was indeed the answer to my worries and heartache. And FINALLY, hubby AGREED WITH ME!!!!!! (Surprised? You really shouldn't be ;) )

"When could you potentially fit us in, then?" - "Let me check... Monday? 28th?" - "I'll look up flights and let you know!" (I'm not one to overthink, I just HAD TO GOOOOOO!!)

On 26th November, I boarded a plane to Maine with Jonas. A very long flight for a 7.5 months old baby, but he literally charmed everybody: the hostesses on board kept coming for more smiles and peekaboos, the passenger next to me let him slaver all over his leather jacket and another man across the aisle offered his help "I know what it's like travelling with children". I remember it all so well! Jonas was so well behaved!

On 28th November, I met Jerald at his practice and he gave us the very best news ever! Jonas's foot was doing so well, that he was happy for us to DITCH the boots!!! I never thought this picture would be the last one of Jonas and his boots and bar, but I'm so glad I took it!

We're now ONE YEAR ON and everything has gone extremely smoothly since our first day in the DTKAFO. I now have a well-rested, happy, running toddler:

 (seemingly a bit drunk when he gets too excited though)

Oh and during that one year... THIS HAPPENED:



New doctors have agreed to follow children using the DTKAFO and hopefully this map will keep growing over the years

Well last week was certainly a very positive one! 😄

After 11 months using the Cunningham Brace/DTKAFO and having various check-ups with various people, my husband and I decided to make the most of our daughter’s half-term school holiday to travel across the Atlantic to Maine and get a full check-up of Jonas’s foot and brace.

Just 2 weeks before, after many trials and tribulations, we’d (finally!) managed to get X-rays to check on how well the brace modification we’d made at the end of July had worked to correct Jonas’s flat foot.

I got the X-ray back just a few days before our flight and was soooooo excited to see that the changes I’d felt in his foot over the last 2.5-3 months were so visible that even I noticed them! I couldn’t wait to get to our check-up and have confirmation that Jonas is well on track!

The trip went well and we got to our appointment with 3 minutes to spare (which is a massive improvement, as I was late for all 3 of our appointments last year 😂). 

We were as happy to see Jerald as he was to see us. We went straight in and he started his check-up, measuring Jonas’s foot, checking his dorsiflexion, etc. He measured his dorsiflexion at 35°! I couldn’t believe my eyes! 

He then went on to examining the brace to which all modifications up until now had been made by my husband under his instructions and decided to tweak it slightly. He replaced the spring steel (apparently hubby had used a bit too much force on it and it might not have survived another adjustment), added extra support for the heel area, changed the straps and added a curved pad over the foot to try and redistribute/slowly erase the puffiness we’ve still got left over from the BNB.

He also made an insole for Jonas’s shoe in order to prevent any stress on his forming plantar arch when out and about.

Since we started using the Cunningham brace 5 months later than suggested and since Jonas doesn’t mind it in the slightest, we’ve discussed getting an extra brace when Jonas outgrows this one. Jerald Cunningham is happy with the thought and we’ll go over it again when the time comes to see whether it is necessary or not.

After the appointment, I wondered how Jonas would do with his insole, but he didn’t seem to notice it. Any kind of adjustment to the brace brings a question mark as to whether it will bother him or not, but once again, he didn’t notice!

That’s us all set on the right path, happy and comforted in the idea that we made the right decision for our son. 😄

Needless to say that we made good use of those perfect feet during our little American escapade!