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.

One day at a time

Pearl was born a little over a year ago. When the doctor placed her on my chest, I noticed her feet and knew she had clubfoot. A few minutes later we noticed her wrist was also contracted and she lacked the normal newborn grasp reflex. I remember thinking, “okay, we will figure this out”. The next day I left the hospital with little information about clubfoot other than the realization that we would need to travel out of state to Colorado or Minnesota for care. I made a rule for myself that I would give myself the weekend to just be present with our new baby and I wouldn’t look up clubfoot. I knew I needed time to recover from child birth and to just lavish Pearl with love.  I was worried I would be too overwhelmed or emotional to cope with the information I gathered. My psychological reaction is common. Stewart & Mishel (2000) reviewed multiple studies about parental stress and childhood illnesses. They discovered that parents tend to either seek information and ask questions or disengage and censor information as a way of coping. Anxiety, depression, and guilt are common as parents navigate the ambiguity of their child’s future and the uncertainty about treatment outcomes. I’m firmly in the ask questions and seek information camp but was wise enough to know then that I needed a few days to adjust first.

When I finally started digging into the information on clubfoot, I felt a mixture of uncertainty, fear, and dread. The casting phase seemed straightforward and easy enough. But the bracing stage made me pause. I wondered about how we would manage, would the local day care still take her, what if we put them on wrong, how would we make sure others used them correctly? My emotional response is not unusual. Many mothers experience distress when learning their children have clubfoot and their ability to cope with the news and successfully navigate the treatment process is dependent upon social support (Coppola, Costantini, Tedone, Pasquale, Elia, Barbaro, & d’Addetta, 2012). Parents of children with clubfoot respond to the medical uncertainty and stress of their child’s condition similarly to parents of other medical conditions and disabilities. Judge (1998) discusses how the use of social support was highly associated with family strength. However, if parents relied on wishful thinking, self-blame, distancing and self-control, there was a negative impact on family strength and coping ability.

I joined several groups on Facebook to reach out to other parents and learn more about what to expect with Pearl’s treatment. I was alarmed at the number of children who were not responding well to bracing or had complications because of poor casting. I knew that the numbers were magnified because people not experiencing challenges would be less likely to post, but I learned very quickly that we were at risk of having a similar experience. It was through social media that I learned about the DTKAFO brace and the Clubfoot Research Foundation. In addition to reaching out to other parents, I dug into the medical research and started asking a lot of questions. I discovered that the relapse rates for kids like Pearl was upwards of 53% (Matar, Beirne, Bruce, Garg, 2017). Two weeks into casting, we decided not to use boots and bar and understood we would be challenging the status quo.

My experience on Facebook has been a mixed bag. The warnings other moms heeded about the need for specialized casting was merited but I had a plan for treatment already and was reluctant to hear it. My plan required traveling to the next state over, not flying half way across the United States. I was overwhelmed by the thought of having to change our plan, yet I had this nagging doubt about having made the right decision. When I took Pearl’s second set of casts off and saw the pressure sores, I felt guilt and doubt and knew we needed to change our plan. On the drive home, I came up with a new plan and I was grateful for having other moms to lean on. We flew to St. Louis for the rest of her casts and her tenotomies and it all worked out. While I found the input of other moms useful in the beginning, I started experiencing push back and shaming about not choosing the traditional brace and that led me to leave any group not directly linked to research discussions or alternative bracing. I also decided to start blogging with some other parents about using alternative braces for treating clubfoot. Critical reflection and journaling are effective strategies for empowering mothers as caregivers (Gibson, 1999). Yet some mothers are explicitly silenced by their doctors regarding them posting anything on social media about using anything other than the traditional boots and bar brace.

Research shows that relationships between health care providers and mothers play a pivotal role in mothers developing good coping strategies and competency as a caregiver (Swallow & Jacoby, 2001). In addition, the need to develop relationships with practitioners is a source of stress to mothers. I dread the orthopedic doctor appointments. None have supported our bracing decision, one even gave me false information about the brace as a scare tactic. I’ve provided technical papers and contact information for the brace and brought up research regarding relapse rates and questions about the status quo, desiring a conversation about it. But that hasn’t happened. I get anxious about feeling patronized and dismissed every time one of those doctor appointments looms on the calendar. Beyond my personal annoyance with these encounters, I feel disempowered and that my desire to have a team working together to care for my daughter is being derailed.

In terms of bracing and managing her clubfoot, I guess we have gone rogue so to speak. I’ve opted for foot x-rays via my Chiropractor, had our pediatrician write the script for braces, use physical therapy and massage in addition to bracing.  We jumped in with both feet, so to speak, and were highly focused on this course of treatment.  And then I received a breath of fresh air.

I recently took her to a doctor at the regional neurology and rehabilitation center.  That doctor treated me with mutual respect and took time to answer my questions, hear my concerns and explain the science behind what we were seeing with Pearl. She also reminded me to take a breath and remember to just enjoy my baby. She mentioned that parents can often get trapped in a cycle of constantly trying to fix the ailment or anticipate the next medical problem. When that happens, we forget to just live in the moment and be present with our children. She said to let Pearl climb, play, get messy and be a “normal kid” and that even if she relapses or other challenges arise, she will be okay. I needed that reminder and I have been thinking about how other parents probably need that reminder too. In addition to just hearing another parent say, I understand what you are going through, or you are not alone.

So, here’s where we are at today. Pearl continues to see a physical therapist and is pretty much done with occupational therapy for her hands. She struggled with eating but successfully completed occupational therapy for that in August. We start speech therapy tomorrow. The doctor we most recently saw observed that Pearl has low muscle tone and that could be contributing to her difficulties with eating, speech and gross motor skills. We still haven’t followed through with genetic testing for distal arthrogryposis, but the doctor says we should because growth spurts can cause contractions in the joints that were previously affected as well as new areas of her body.  I will be working on insurance authorization for that this week. This summer, I was diagnosed with hypermobile type Ehlers Danlos Syndrome and it is possible Pearl has that too, but we won’t be able to diagnose her until she is about 10 years old.  

Pearl is happy and healthy. She is also very smart. She loves to play with her sister and likes piggy back rides. She thinks the game of peek a boo is a lot of fun and is crawling everywhere now. She likes to pull herself up to standing and is learning how to move her hands when we sing “Itsy Bitsy Spider”. Drawers and cabinets provide endless entertainment and she likes to share her food with the dogs. She hates baths and water in general but loves to have books read to her. She loves to snuggle and especially loves snuggling with her dad.  In summary, we couldn’t ask for a better baby girl, and we love her with all our hearts.

References:

Coppola, G., Costantini, A., Tedone, R., Pasquale, S., Elia, L., Barbaro, M. F., & d’Addetta, I. (2012). The impact of the baby’s congenital malformation on the mother’s psychological well-being: an empirical contribution on the clubfoot. Journal of Pediatric Orthopaedics, 32(5), 521-526.

Gibson, C. H. (1999). Facilitating critical reflection in mothers of chronically ill children. Journal of Clinical Nursing, 8(3), 305-312.

Matar, H. E., Beirne, P., Bruce, C. E., & Garg, N. K. (2017). Treatment of complex idiopathic clubfoot using the modified Ponseti method: up to 11 years follow-up. Journal of Pediatric Orthopaedics B, 26(2), 137-142.

Stewart, J. L., & Mishel, M. H. (2000). Uncertainty in childhood illness: A synthesis of the parent and child literature. Scholarly inquiry for nursing practice, 14(4), 299-319.

Swallow, V. M., & Jacoby, A. (2001). Mothers’ evolving relationships with doctors and nurses during the chronic childhood illness trajectory. Journal of Advanced Nursing, 36(6), 755-764.

Judge, S. L. (1998). Parental coping strategies and strengths in families of young children with disabilities. Family Relations, 263-268.

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?

When in doubt

Where we started: 

 Pearl was born with severe atypical bilateral clubfoot. Many children with feet like hers have underlying neuromuscular or connective tissue issues that are hard to pinpoint or the clubfoot is connected to another syndrome like tethered spinal cord. Pearl's gluteal cleft is asymetrical and we are waiting until she is about a year old to evaluate for possible tethered cord. Next week, we see a geneticist to evaluate whether or not we have a connective tissue disorder that could be connected to her feet. She has good range of motion and flexibility now, and I have no doubt the brace has played a vital role in that. The brace also continued to correct her feet after the casts came off following the tenotomy (heel cord release). We've monitored her progress with x-rays and photos. She sees a physical therapist each week who assesses her flexibility. Recently, I became concerned because the creases on the bottoms of her feet are persisting. I took her to the local orthopedist and he doesn't think she needs casts but he was concerned that she didn't have enough external rotation of her feet to properly stretch the Achilles tendon (relapses occur because the tendon gets too tight during growth spurts). He also commented that braces can't or aren't intended to correct feet only hold correction. He is correct to an extent. The traditional boots and bar brace does not correct feet. It was designed to hold correction made from casting the feet. The DTKAFO brace is different.

Venting Side bar: I gave him the technical paper on the brace, x-rays, pictures and contact information for Cunningham Prosthetic back in April. It is clear to me that he didn't look at any of that information and doesn't care. He suggested we switch to the traditional brace more than once in the 20 minutes we were in his office. I've heard of doctors reporting mothers to CPS for choosing not to use the traditional brace and babies being blacklisted from every orthopedist in a state for the same reason. Certain vendors of orthopedic braces are now refusing to sell components for alternative braces due to pressure from a handful of influential physicians. Progress is stifled by such resistance. A recent study indicates that baby feet adapt quickly to changes made by casts and that a week long casting period isn't necessary (they placed pressure sensors in the casts). The results indicate that casts could be applied over a shorter period of time, reducing treatment time from 2-3 months to about one month. The study also discussed how a brace could be designed to do the correction based on that information. When the researchers approached orthopedists in their country about it, they were dismissed. 

Progress and where we are now: Pearl started wearing braces in December 2017. After only 3 weeks we began to see improvement in her feet and it was clear that the braces were correcting her feet. We took x-rays at the beginning of bracing and after two months and will take them again soon. Those are discussed in a previous post. While the braces have helped, and other moms have told me feet like these are a process, I began to wonder if we'd reached a plateau with correction and talked to Jerald about making adjustments to the braces to help continue her progress. When I work on her feet I can stretch the plantar surfaces so that the bottoms of her feet become flat and the creases almost completely disappear. When she stands on them, they flatten out properly as well. Her heels are slowly dropping into place which is also a common issue with clubfoot babies. They often have "empty" heels because the bone that belongs in the hind foot is elevated inside the foot and out of position.

I asked Jerald if we could modify the foot bed to
 provide that plantar stretch while also adding more force to abduct her feet outward (think duck walking). We sent the braces via fedex on Wednesday and received them today. The foot bed has been modified to extend her feet outward and a wedge has been placed at the front of the foot bed to raise her metatarsals to stretch the bottom of her foot. The straps were modified to facilitate this stretch as well. We are taking the braces off every two hours to check for pressure points and red skin and to give her time to adjust to increased stretching and changes in sensations in her feet.

Why the status quo isn't good enough: There is no cure for clubfoot. It is caused by a change in the cellular structures of connective tissue, muscle fibers and how those tissues are enervated and receive blood and nutrients. Adults with clubfoot are more likely to develop arthritis and this is exacerbated by scar tissue from surgeries and lack of flexibility in the feet. Some adults experience such debilitating pain that they end up in wheel chairs or opt to amputate. The research on success rates in the traditional brace is skewed because they don't follow patients long enough, counting successes as no relapse up to age 5. In reality, children should be followed through puberty. I am certain Pearl would not have tolerated the traditional brace and she would not have the range of motion she has now if we used the static boots and bar. Stay tuned to see how the latest modifications to her braces make a difference.

It takes a village: early interventions and clubfoot

Clubfoot is the most common birth defect, yet it is commonly misunderstood by practitioners and families caring for children with the condition. There is no cure for clubfeet. The deformity is caused by mutations in DNA that result in changes in how connective tissue, muscle fibers, fatty tissue, capillaries and nerve endings are laid down in the feet. Even after stretching casts and tenotomy, the anatomy of the foot predisposes it to changes in form and function. Studies indicate that the forces applied to feet during walking are distributed differently in clubfeet compared to normal feet. These changes in pressure distribution affect gait and how children stand (Pauk, J., Daunoraviciene, K., Ihnatouski, M., Griskevicius, J., & Raso, J., 2010).

The function of the foot impacts the biomechanics of the leg, knee and hip. Dysfunction in the foot can lead to lower limb, knee and upper limb/hip/lower back injury or pain (McClay, I., & Manal, K., 1997, Dananberg, H., & Guiliano, M., 1999). When clubfoot is treated, attention should be given to the entire leg and lower back. One of the reasons we decided to use the DTKAFO brace is because we believed the brace would be more ergonomic and would be an effective tool for treating the leg and foot system affected by the clubfoot deformity.

Any type of device that is used to support parts of our bodies can have a negative side effect of weakened muscles or compensation for lack of use by other parts of the body. Bracing wear time schedules for traditional braces and for the DTKAFO factor this in. It’s a fine balance between optimal brace time for maintaining correction and brace free time for muscle development and gross motor skill development. Pearl is struggling a little with reaching certain gross motor benchmarks. 

We are working with a physical therapist who taught us how to position Pearl when she is sitting to help her learn to transition into a crawling position. We practice this with the braces off and on. We also position her in standing positions, holding onto to sides of chest high boxes or toys both in her braces and out. We stretch and massage her feet and lower legs every day. An occupational therapist visits her every other week to monitor how Pearl uses her hands and wrists. We also used stretching and massage along with a splint to correct the deformity in her hands. Yesterday, we met with another occupational therapist who specializes in how babies and children eat. She taught us some strategies to help Pearl learn to eat properly. Pearl is struggling with how to use her tongue and mouth to push food back and swallow it.

All of these specialists come to our home or the daycare. In the US, the federal government allocates money for each state and territory to provide services to children with disabilities between the ages of 0-3. These early intervention services provide families with access to therapy, adaptive devices, and other services in the home or the daycare. This program is a powerful tool for helping children reach significant growth and development benchmarks. If the providers didn’t visit Pearl at home or at the day care, we would need to travel an hour each way to visit a therapist. This program removes barriers to access to care for many families.

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In addition to the specialists we see through early intervention services, we Skype monthly with Jerald Cunningham, reviewing her progress in the DTKAFO brace. Last month, our physical therapist joined in on the call as well. Jerald is able to troubleshoot issues with the brace during these video calls. We’ve modified the brace twice via Skype call making adjustments specific to Pearl’s feet. Pearl’s teachers at the daycare are also a critical part of this team. They follow the therapy routines when Pearl is with them.

There are many uncertainties ahead of us. Pearl’s feet were under-corrected when we started bracing. The brace is correcting her feet, which a traditional brace cannot do. But the brace may only be able to correct her feet to a certain point and we will need further stretching casts or other interventions. Pearl may need speech therapy, she might also have a tethered spinal cord. Those two things we will revisit closer to her first birthday. In June, I will be evaluated by a geneticist to determine if Ehlers Danlos is also part of Pearl and my medical stories.

All of it can be overwhelming, worrying about her feet and a relapse, wondering if there are other underlying medical issues, stressing out about her being behind with some of her growth and developmental benchmarks, sticking to the stretching and massage routine even when exhausted. Our caseworker reminded us that Pearl has been through a lot already in her life and playing catch-up with reaching certain benchmarks is to be expected. I am grateful for the support we have from the specialists we work with, family, friends and other families who also have children with clubfoot. 

References: 

Dananberg, H. J., & Guiliano, M. (1999). Chronic low-back pain and its response to custom-made foot orthoses. Journal of the American Podiatric Medical Association, 89(3), 109-117.

McClay, I., & Manal, K. (1997). Coupling parameters in runners with normal and excessive pronation. Journal of Applied Biomechanics, 13(1), 109-124.

Pauk, J., Daunoraviciene, K., Ihnatouski, M., Griskevicius, J., & Raso, J. (2010). Analysis of the plantar pressure distribution in children with foot deformities. Acta Bioeng Biomech, 12(1), 29-34.

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.

Finding Our Feet: Bracing progress and daily routines

 The other day, our orthopedist said the goal of clubfoot treatment is to get a functional foot that can  fit properly into a shoe without pain. He said, at this point we'd reached that goal and Pearl could comfortably wear shoes.

Shoes.....I donated all of her shoes after we learned she had clubfeet. I knew she'd be in casts until she was three months old and braces 23 hours a day until she is about 1 year old. And then she can wear shoes because bracing will only happen while she's sleeping. But even then, I wonder if we will use reverse last shoes, which are specifically made for children with orthopedic issues. I wore them for in-toeing when I was a toddler. These shoes will help keep her feet turned outward, one more intervention to hopefully prevent relapse.

We traveled half way across the US for her
casting, tenotomy and braces. Her feet came out of casts in December and I was heart broken when I saw them. I knew right then that her feet weren't fully corrected. Her feet are atypical and she is at greater risk for relapse and failed treatment. Traditionally, a child in her situation would have additional stretching casts and another tendon release. I asked if we could see if the brace could be modified to continue to correct her feet. While it isn't advisable to brace when feet are not fully corrected, we did it anyway. Ultimately it was our decision. The x-rays show that the brace is working! Her bones are aligning properly and there is less flexion in the mid foot. She still has creases on the bottom of her feet. I suspect those will be there for several years. But her feet are pliable and have great flexibility. When the braces were made, she had 5 degrees of dorsiflexion in her right foot and 0 in the left. She is now at a 12 in the right and 7-10 degrees in the left. The braces were modified to facilitate the realignment of her forefoot and mid foot so that the entire foot will position properly under the tibia.

She is learning to stand and starting to take her first steps in the braces and out of the braces. We see a physical therapist once a week and we do massage and stretching/exercises 3 times a day.

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!