We returned to the orthopedic surgeon today to get an opinion on how M's feet and legs looked after a few days out of casts. The verdict was mixed:
-While swelling had gone down some, there was still a lot in parts of his feet and legs. This would make it hard to cast the foot in a position that brings any benefit
-Both feet can still be manipulated into the "corrected" position, so there hasn't been a significant loss of progress over the few days out of casts.
-At this point there is a high probability that continuing to cast him is not actually repositioning the foot, but instead it could be bending the tibia
The result of this was a decision to leave him out of casts for a bit longer--at least two weeks, possibly more. We will be stretching his feet to try to maintain the earlier progress from casting, and also massaging to continue to bring the swelling down. He will also get lots of opportunities to work on the gross motor skills he hasn't been able to develop while in casts, and hopefully a session with a physiotherapist to help us with strategies for improving those skills. If he can master standing and weight bearing before the hip procedure, his recovery and acquisition of skills later will likely be faster.
After that, the plan is still in flux depending on how things develop. The options on the table include:
-if swelling and range of motion improve a lot in the next 2 weeks, we could try casts again. There is a possibility of "short leg" casts that end below the knee, so crawling and standing would both be easier to work on.
-he could be fitted for orthotics of some sort. This is the least likely option right now, because with the hip procedure looming it's possible that whatever orthotics he gets wouldn't be the right fit or choice after that, so it would be a waste to order them now.
-he might stay out of casts/braces entirely until the hip procedure, continuing with stretching and working on motor skills.
-he will almost certainly have a repeat tenotomy on both feet when he is under for the hip procedure. Because he will be sedated anyway, they will be able to manipulate and cast the foot while he is relaxed, which should give better results than the procedure he had previously. (the earlier tenotomy definitely made a big difference to his feet, and for most babies that is enough--because his case is more severe it looks like it wasn't enough for him)
As for the hips, we won't know for sure what is happening for a while. The expectation is that we will be scheduled for March, but we have been advised to set up an earlier pre-op appointment so we could get in earlier if there is a cancellation. There are also a lot of possible outcomes of that procedure, as I understand it. (The doctor we met today is not the one who will be performing the procedure, so she walked us through the possibilities she was aware of.)
The most likely outcome of the procedure is that he will need a cast for 6 weeks, followed by a brace for 6 weeks after that. It could be a "full body" spica cast that goes up his torso, but apparently it is more likely that he will get shorter casts that start at the hips. Both of those would of course be awkward and inconvenient, so we are still hoping that the arthogram reveals that the joint is largely healthy and can be treated with a bit more bracing instead.
The bottom line of the appointment, though, was that "by the time he's two years old, no one will be able to tell any of this happened." And while that milestone seems pretty far away right now, in the grand scheme of his life this will have been a very short period. It helps a lot to remember that!
-While swelling had gone down some, there was still a lot in parts of his feet and legs. This would make it hard to cast the foot in a position that brings any benefit
-Both feet can still be manipulated into the "corrected" position, so there hasn't been a significant loss of progress over the few days out of casts.
-At this point there is a high probability that continuing to cast him is not actually repositioning the foot, but instead it could be bending the tibia
The result of this was a decision to leave him out of casts for a bit longer--at least two weeks, possibly more. We will be stretching his feet to try to maintain the earlier progress from casting, and also massaging to continue to bring the swelling down. He will also get lots of opportunities to work on the gross motor skills he hasn't been able to develop while in casts, and hopefully a session with a physiotherapist to help us with strategies for improving those skills. If he can master standing and weight bearing before the hip procedure, his recovery and acquisition of skills later will likely be faster.
After that, the plan is still in flux depending on how things develop. The options on the table include:
-if swelling and range of motion improve a lot in the next 2 weeks, we could try casts again. There is a possibility of "short leg" casts that end below the knee, so crawling and standing would both be easier to work on.
-he could be fitted for orthotics of some sort. This is the least likely option right now, because with the hip procedure looming it's possible that whatever orthotics he gets wouldn't be the right fit or choice after that, so it would be a waste to order them now.
-he might stay out of casts/braces entirely until the hip procedure, continuing with stretching and working on motor skills.
-he will almost certainly have a repeat tenotomy on both feet when he is under for the hip procedure. Because he will be sedated anyway, they will be able to manipulate and cast the foot while he is relaxed, which should give better results than the procedure he had previously. (the earlier tenotomy definitely made a big difference to his feet, and for most babies that is enough--because his case is more severe it looks like it wasn't enough for him)
As for the hips, we won't know for sure what is happening for a while. The expectation is that we will be scheduled for March, but we have been advised to set up an earlier pre-op appointment so we could get in earlier if there is a cancellation. There are also a lot of possible outcomes of that procedure, as I understand it. (The doctor we met today is not the one who will be performing the procedure, so she walked us through the possibilities she was aware of.)
The most likely outcome of the procedure is that he will need a cast for 6 weeks, followed by a brace for 6 weeks after that. It could be a "full body" spica cast that goes up his torso, but apparently it is more likely that he will get shorter casts that start at the hips. Both of those would of course be awkward and inconvenient, so we are still hoping that the arthogram reveals that the joint is largely healthy and can be treated with a bit more bracing instead.
The bottom line of the appointment, though, was that "by the time he's two years old, no one will be able to tell any of this happened." And while that milestone seems pretty far away right now, in the grand scheme of his life this will have been a very short period. It helps a lot to remember that!
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