I've had a few requests recently for news about M, and going back I don't think I even posted after our last appointment back in November, so I'm way overdue. (November was, um, well, we'll just call it hard.)
So the November appointment was a pretty routine hip and foot check up. X-ray for his hips, which showed that there had been improvement but the left still lagged behind the right in bone development. Everything was aligned properly, but the "ball" of the joint was not as big as you would normally expect, and the "socket" is a bit shallow.
So we've had to continue with the hip brace at night--remarkably, he still doesn't complain about it, and other than being an early riser he sleeps fine with it on. I mostly want to be done with it to make PJs easier--the brace requires a onesie underneath, because a regular shirt rides up above the waist strap and it chafes. It's pretty much impossible to find onesies larger than 24 months, and while they stretch enough to fit for now they can't last too much longer! Plus, we have matching PJ sets and he can't wear the tops, so that's no fun.
Our hope is that as he has gotten stronger and started to bear weight on his legs more, the bone will naturally form and everything will be OK. The plan is to repeat the x-ray in 6 months (which, since I'm late here, is actually just 2 months away now--late May). At that point we will hopefully also settle on a final plan for his feet.
The good news is his feet have maintained their correction since we finished casting roughly a year ago. It is easy to manipulate his feet into a "neutral" position. Unfortunately, he cannot hold them in that position himself, which will be very limiting if it doesn't change. Without his AFOs on, he stands and steps on the sides of his feet. He is also really lacking in strength below his knees, and it is extremely challenging to develop this since he can't maintain a neutral position when barefoot. Our expectation right now is that he will have another surgery later this year to further correct the alignment of his feet.
As far as skills go, he's definitely making progress but it's still slow and steady. He cruises around furniture easily now, sometimes letting go for a few seconds and standing unsupported. At times he has seemed interested in taking an independent step, but so far it hasn't happened. He does a lot of walking holding hands or using push toys. (Yes, my back is sore! We tried a set of "walking wings" to support him without having an adult hunched over, but he turned into a puppet and refused to use his own muscles at all once we put them on. Luckily he's getting taller and I don't have to bend far now.)
He still struggles a lot with proper form when taking steps--he has a tendency to lock his knees and to point his toes inward, both of which are logical responses to what his body is dealing with. We've tried several tools to help him take more natural steps, and last week his physiotherapist may have hit on a winner--what are called "twister straps". M's are much shorter than those pictured, and just wrap around his legs once, but it's enough to cause him to hold his feet more naturally and to bend his knees a bit. The hope is that wearing them will help him develop the right muscles and habits to be able to do these things naturally one day.
So that's where we are now! Hopefully in 2 months we will get good news from his x-ray and come away with a plan to really get his feet firmly aligned underneath him. And he might even be walking on his own by then.
So the November appointment was a pretty routine hip and foot check up. X-ray for his hips, which showed that there had been improvement but the left still lagged behind the right in bone development. Everything was aligned properly, but the "ball" of the joint was not as big as you would normally expect, and the "socket" is a bit shallow.
So we've had to continue with the hip brace at night--remarkably, he still doesn't complain about it, and other than being an early riser he sleeps fine with it on. I mostly want to be done with it to make PJs easier--the brace requires a onesie underneath, because a regular shirt rides up above the waist strap and it chafes. It's pretty much impossible to find onesies larger than 24 months, and while they stretch enough to fit for now they can't last too much longer! Plus, we have matching PJ sets and he can't wear the tops, so that's no fun.
Our hope is that as he has gotten stronger and started to bear weight on his legs more, the bone will naturally form and everything will be OK. The plan is to repeat the x-ray in 6 months (which, since I'm late here, is actually just 2 months away now--late May). At that point we will hopefully also settle on a final plan for his feet.
The good news is his feet have maintained their correction since we finished casting roughly a year ago. It is easy to manipulate his feet into a "neutral" position. Unfortunately, he cannot hold them in that position himself, which will be very limiting if it doesn't change. Without his AFOs on, he stands and steps on the sides of his feet. He is also really lacking in strength below his knees, and it is extremely challenging to develop this since he can't maintain a neutral position when barefoot. Our expectation right now is that he will have another surgery later this year to further correct the alignment of his feet.
As far as skills go, he's definitely making progress but it's still slow and steady. He cruises around furniture easily now, sometimes letting go for a few seconds and standing unsupported. At times he has seemed interested in taking an independent step, but so far it hasn't happened. He does a lot of walking holding hands or using push toys. (Yes, my back is sore! We tried a set of "walking wings" to support him without having an adult hunched over, but he turned into a puppet and refused to use his own muscles at all once we put them on. Luckily he's getting taller and I don't have to bend far now.)
He still struggles a lot with proper form when taking steps--he has a tendency to lock his knees and to point his toes inward, both of which are logical responses to what his body is dealing with. We've tried several tools to help him take more natural steps, and last week his physiotherapist may have hit on a winner--what are called "twister straps". M's are much shorter than those pictured, and just wrap around his legs once, but it's enough to cause him to hold his feet more naturally and to bend his knees a bit. The hope is that wearing them will help him develop the right muscles and habits to be able to do these things naturally one day.
So that's where we are now! Hopefully in 2 months we will get good news from his x-ray and come away with a plan to really get his feet firmly aligned underneath him. And he might even be walking on his own by then.
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