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!