August 24, 2016

one step back-joseph's clubfoot journey

earlier i shared the beginning of joseph's clubfoot journey. it was a post of hope and progress. now i feel like we are taking one step back.

if you read the post, you'd know that we didn't get to find out in utero if he was clubfoot or not-we found out after he was born. but not right when he was born... it was actually twelve weeks later-after fighting for referrals and second guessing every suggestion thrown our way-and even then we weren't sure what to do with this diagnosis joseph was given. but treatment was to be followed with the ponseti method of 5-6 casts, a tenotomy, then bnb (boots and bar) 23/7 for three months, then gradually going down in hours until graduating to nighttime and nap wear up to five years. which is the treatment we thought we were going to follow, but are now being advised differently.

when he was born, everyone said his foot was like that because he was smooshed inside me (i felt his right foot all up in my rib the last three or so months of my pregnancy) and to wait it out, and if it didn't correct itself by the time he was one, to then get it checked out. we felt like that wasn't good enough, wasn't right, so we fought for referrals before seeing dr. maguire. not knowing what to expect at the first visit, we show up, he says 'oh, it's clubfoot', casts our baby, tosses a piece of paper at us with the ponseti method website and says to look that up and sent us on our way (not dramatizing here). he ended up having five casts and was told no tenotomy because his foot had full flex. joseph was then placed in bnb and we were told to have them on 20/7, even though ponseti is 23/7, for 2-3 months and come back in five weeks for a checkup.

at the five week checkup, however, joseph was graduated to nighttime wear only. this was very frustrating for us because we don't know whether or not the diagnosis is even correct, since so many people have mentioned that it was most likely positional clubfoot, not true clubfoot, and phsyical therapy is how it should be treated after casts, not bnb. it's also very frustrating that a doctor would recommend the ponseti method and then not even follow it.


we're questioning this recommendation and his entire diagnosis now and wondering... is this recommendation being made because it's positional clubfoot and he didn't actually relay that to us? it is because joseph's foot wasn't as severe so he's adjusting the treatment? do we not actually understand or remember the initial diagnosis and just assumed it was 'true' clubfoot all along?

we have so many questions that need to be answered and we are hoping we can find them when we seek a second opinion. a lot of what has been written here was posted in the clubfoot community of california and clubfoot momma's groups on facebook and we received some good advice: stick with our gut and keep him in 23/7 wear until we get a second-or third-opinion and go from there. we have made contact with another doctor here in california and are hoping to get in with them soon. if we still feel the need to seek other advice, we plan to take a trip to st. louis to see the dr. dobbs himself.

our main goal here is to have a happy and healthy baby with a foot that has been treated, and corrected, properly. we really want the best for joseph and it's so hard to feel at ease when so many different things are being said to do that totally goes against what was expected in the first place. and even then we're not sure if that's exactly what joseph needs. but, with that said, we are so grateful for all the parents that have lifted us up during this time with words of encouragement, as well as sharing stories of similar situations of their own. the end result in most cases have been fully corrected feet, so it gives us hope that there is a light at the end of this long tunnel and we can keep moving forward.



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