The yin/yang of rhizotomy

So I was going through some video clips to show Hannah's current PT the way she moved and walked before surgery.  We purposely took video the day before the procedure, when we were at a playground near my brother's house, because we wanted to be able to look back and see the changes.  I haven't looked at these until today, and honestly, they were hard to watch.

In so many ways, Hannah's body is "new and improved" for lack of a better phrase.  In previous posts I've listed all the benefits we have seen, and they are real and they will help her in many ways.  But the problem with rhizotomy is that before the surgery, there's no way to know how much a kid is relying on high tone to move around, and how much weakness is under that high tone.  Some tone is good; taking away too much, on a kid with a lot of underlying weakness, means they will lose a lot of function and have big hurdles to overcome to try to regain it.

We hoped this was the right thing for Hannah but it was a leap of faith.  We worked to get her as strong as we could before the surgery, we did our research, and we looked at the other factors involved in choosing to do this now.

I still maintain that this was the right thing to do.  We knew that a regression in function was inevitable, and that true benefits of the surgery cannot be accurately measured until 6 months to a year post-op, and they can even continue beyond that, if kids are continuing to build strength and endurance.

But seeing Hannah move around in these clips makes me sad.  I better appreciate her love/hate with her walker, her frustration with how hard this work is, and her emotional ups and downs.  I'm actually amazed, after seeing this, that she is not more frustrated.  She did say to me the other day, when I asked her what was hard for her about using her walker, "I just want it to be the way it was before the operation."  Ouch.

This is where the true work lies.  The patience and motivation and stick-to-itness that most of us would have a hard time sustaining.  If Hannah can keep having some small successes, I hope that she will stay motivated and see the light at the end of the tunnel.  I worry that being in the hospital for too long will sap some of that, and take some of her fighting spirit.

Thankfully, earlier this week we had a big, big success in the pool:

I almost fell off my chair when I looked up to see Hannah walking around the pool. By herself.  I'ts not that clear in the clip, but her PT does not have her hands on her at all except for a moment toward the end.  Before the surgery, she took about 5 quick steps in the pool once with her therapist from home.  The other day, she did this over and over again-she was so stinking proud of herself-and she had such great control of her body.  It was amazing.

So of course, one wonders if this ability to walk in the water translates into the ability to walk on land some day.  Well, her PT tried to get Hannah to walk independently in more shallow water and she wasn't able to do it.  The bouyancy of the water and the support it provided her was enough for her to be able to do it on her own when the water was chest-high.  Her PT said if we could get her walking in water at about hip level or below, she had great potential for independent walking.  I know that the next time Hannah is back in the pool, this is all she is going to want to do.  Hopefully we can practice doing it in more shallow water and see how she does.  But either way, it was amazing to see her do it in one way or another, and her pride in herself was palpable.  This is definitely not something she could do before the surgery, which I was clear to point out to Hannah (and myself) to remind us both why we did this, for those other times when we need reminding...