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?

...