In general we are just waiting and watching Mason to learn what changes surgery brought. One of the difficulties is that he's just 2 years old and really can't explain what feels different. We can make our observations and guesses and we could be right or totally misinterpreting what we see. With that disclaimer, here are things we think we're seeing:
- Sense of touch in new areas - this is a big one we are making guesses on. From what we can tell in playing with Mason and trying to touch him when he's not paying attention to our hands, it looks like Mason has gained some ground here. On his left leg he can now feel the top of his thigh down almost to the knee. The sense of touch fades out along some places on the sides and underneath. This is new. He's ticklish. We think he has also gained some feeling in the right leg/thigh, though not as much. The jury is still out on what he can feel on the lower back, butt, and abdomen. He's pretty protective of his back still, telling us not to touch it. We'll explore this more as time goes on.
- Strength gained in his hips - He is able to pull up at the hips still and can do so with more strength, pulling those legs higher up to either side (in a frog position). He can NOT straighten at the hip. We were not expecting that anyway.
- More flexibility in the hips and feet - we can tell a difference because we can now stretch things out more than before. A little. Will he still need surgery on his hip and feet? Probably on one side. We'll be talking with orthopedics later this month at Myelo clinic.
- Some new feeling in his belly, on the inside - This one we didn't expect. Every night during Mason's enema he's telling us 'ow' because his belly hurts. It's the cramping that happens after he's had the enema solution in for a few minutes. In all the time we've been doing daily enemas up to now he's not ever felt uncomfortable. It's a great thing because we're using that as our cue to move to the potty and let things go. We don't know what this means beyond it is something Mason never felt before surgery. Does it mean things are working a bit better (more coordinated) in his bowels? Maybe. Does it just mean that now he's going to be uncomfortable every single night during his enema? Maybe. Like many things with Mason we will just have to wait and see!
Next up in Mason's medical agenda is Myelo clinic in late April. It will be a full team appointment where we check up with all of his specialists and I expect to come out of that with more appointments with a few of the specialists.
That's it for now, I'm off to enjoy the warm weather with my kids in the back yard.