Clubfoot

No More Casts!

Well it’s official: Jonas is done with casts and his feet are corrected! That doesn’t mean we’re done yet, but just look at those beautiful feet…

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Free at last! You can kind of tell his legs took the shape of the casts and there’s a teeny bit of bruising and wrinkling on the top of his feet, but overall he came out in amazing shape. (and it all normalized in a couple of days) Just for a little perspective, this is the difference six casts in two months made:

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Pretty amazing! Not that he seemed to mind the casts so much by the end, but I was certainly glad to be rid of the stress of not damaging them, not being able to bathe, worrying about making it back to the clinic before it was too late (you can only keep them on for so long before they grow out of them) and so forth. But by the end of this portion of his treatment, they had basically become an extension of his legs 🙂

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I’ve said it before and I’ll say it again: it is incredible how resilient babies are. Our sweet Jonas has had such incredible patience and calm throughout all of this. There were definitely rough nights along the way, but he amazes me.

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Funny side story: a grad school friend of Andrew’s was so kind and offered us a hotel stay using her points when we went down to the clinic this last time (it definitely adds up over time), and we were very grateful to take her up on it. So we drove down the night before, and while we were eating breakfast and getting ready to head to Shriners, Andrew came back from loading up the car to announce someone had broken into our car! My heart dropped when I realized I had forgotten to bring up my camera bag with us the night before — I never leave it in the car, but of course the one time I did… But get this: miracle of miracles, someone must have scared the thief away, because all they got was our snack bag! Joke’s on them, I can just imagine their face when they opened up what they probably thought was a purse to find… fruit snacks and a clementine.

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Really, it’s a whole series of tender mercies because 1) they didn’t take anything of consequence (I was almost in tears when I realized I had left my camera in the car), 2) Andrew happened to decide he wanted to load up the car before we ate instead of checking out after on our way out, like we usually do, which meant we were only a few minutes late to our appointment that morning 3) at least we only had to pay for the window and not the window and a hotel stay and 4) we got in pretty quickly to a repair shop that day, had a family lunch at Denny’s while we waited, and were able to be on our way. What a day though…

Anyway!

We got to Shriners and a tech swaddled him up and sawed off his last set of casts. I couldn’t wait to see what his feet looked like after all those weeks. (Adelina not so much apparently. Ha.)

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Jonas was perfectly calm as usual — something about the really loud, vibrating saw must be soothing!

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Then someone from the orthotics clinic came over to measure and fit him for his brace, and we went over to wash off three weeks’ grime.

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New sensations! Now he can bend his knees, but his legs need to move together. This brace (commonly called Boots and Bar –Mitchell boots and a Ponseti bar — or BNB) keeps his feet turned out and his heels pressed down to maintain the correction. Relapse is extremely easy when they’re this little and bendy, so that’s why he’ll be in BNB 23 hours a day, then only for nights and naps after about three months, until he’s four.

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It’s still a long road, but the added mobility and convenience are amazing! We can have new shoes shipped to us as he grows, he can have baths, we get to take it all off for some free time, the bar snaps right off when I’m changing or dressing him… life is pretty great. And the best part: we don’t have to drive to SLC weekly anymore. We’ll just go in to make sure everything’s on track every few months from now. That’s not to say we don’t love our doctors and nurses and techs who helped Jonas during all of this!

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Dr. Woiczik (above) was there at the beginning and end of casting, which is kind of funny because technically our doctor was Dr. Hennessey, but due to scheduling and travel issues it ended up being half and half exactly. We trusted both of them completely though, and we were in such excellent hands. Both of them were extremely professional and caring — I was really impressed for example when we came in for our second cast and Dr. Woiczik popped in to see how the first week had gone even though our appointment was with Dr. Hennessey. There was also a PA named Jamie who assisted at times, I’m assuming she was completing a residency because she was training under other doctors, and she was also great. It gave me a lot of confidence that they coordinate on cases and work together.

I’ve mentioned before that I’m on a Facebook group for clubfoot moms and I’m absolutely shocked at some of the stuff you see out there — doctors treating clubfoot with improper techniques (the Ponseti method is the only proven treatment) or variations of the correct treatment (like only casting from the knee down, which won’t cut it at this age) that end up making their cases worse, clinics that don’t even use proper orthoses (“oh just buy a cute pair of shoes you like and we’ll screw a bar onto it!” <– not joking, that’s a real quote), and so forth. Feet that are absolutely not properly corrected by doctors who claim to be Ponseti-certified, repeat tenotomies and surgeries at later and later ages… It’s sickening. I am SO grateful we happened to live relatively close to not only a good care provider, but also a Shriners clinic, which means we don’t have to spend a fortune on the boots and bars (they have a special program to pay for them after charging our insurance, which is such a huge blessing).

I used to sort of roll my eyes at “clubfoot awareness” because I thought, “OK, tell people clubfoot exists, voilà. Do we really need special ribbons and stuff? We’ve already found a cure/treatment, this isn’t exactly brain cancer!” But I’m realizing what’s still needed is awareness that not just anybody can fix clubfeet — and certainly a community of people who know what it’s like helps. The Ponseti method is time-tested and it’s how it’s done, period. Anything else is bad news (until we see studies on any other techniques), and apparently a lot of doctors think they can just make it up as they go, and parents and children are suffering for it. If you are starting off treatment for a clubfoot infant, you can find a list of providers here. Some excellent resources for parents — compiled by a group of parents with a lot of combined experience — are also found here.

Anyway, off my soapbox for now. And there we have it: one happy boy (three months already?!), and a family that’s breathing a little easier! Onward and upward!

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