Thursday, August 12:Update

It’s a down day. Grapevine has reintroduced the Baclofen pump as a recommendation for Claire. The physical therapist explained that she is unable to break through Claire’s muscle tone because of the spasticity; and if the therapist can’t break through the tone, then we don’t think Claire can either. This could mean that a lion’s share of Claire’s pain and discomfort is coming from her rigidity. In normal English Claire is very tight on her right side. She has large muscle knots in her left calf, bicep and trapezius (neck) muscles. Most of the therapy session is spent just trying to stretch these areas. We and the therapists feel that we’re racing on our hamster wheel, and we’re just not gaining any ground. Enter the Baclofen pump.

We have seen the Baclofen pump as a solution of last resort. There are also some complicating issues that may preclude Claire from having it anyway. But Claire’s new occupational, speech and physical therapists have all mentioned the pump and gently prodded us to consider it. I think it’s the gentle prodding that is causing more headaches. We’d really like a professional opinion one way or another with an explicit discussion about the risks, downsides and upsides. We appreciate the consultative approach, but we’d like an expert to stand up and tell us what they think is best for Claire. Because that’s what we’re interested in. If we’re at the solution of last resort and that is what is going to help Claire improve, then we’ll take that path.

The pump still causes its share of trepidation. We don’t like the idea of Claire going into the operating room again. And we also want to be assured that the pump will work, that we’re not assuming the risks for a possible solution: it needs to be a real solution that will accelerate her recovery, or at least get it moving again off this plateau. Whether it will or not has yet to be explained to us. Claire is scheduled to return to Dallas OCH on August 25th for a meeting with her advising doctor. We will be discussing the Baclofen pump then and seeking the expert’s recommendation.

Until then we will continue on the same path. We feel hamstrung knowing that there always exists the potential that we could be doing more and we just lack the knowledge and resources to draft a comprehensive plan of attack. We’d like to help Claire break out of the cycle of pain causing tensing, causing more pain, and so on. It breaks our hearts to see what her body is doing to itself. We hope a solution presents itself soon, whether it’s the Baclofen pump or something else.

Today marks the end of another formal therapy week. We’ll continue¬† working on Claire through the weekend and prepare for next week’s events. My mom gets her on Tuesday, shortly after Claire has her second MRI. We are approaching the MRI with mixed feelings and we haven’t decided yet whether we will request the results or choose to keep them out of our knowledge set. We know that if the results come back negative, it won’t change our approach or our hopes for Claire’s recovery. It would only make it more difficult to remain hopeful. So since it won’t change how we’re going to behave, the knowledge becomes superfluous. We will be wrestling this issue over the weekend.

Thank you for continuing to pray for us. We need your prayers over the next few days particularly as we start to evaluate some bigger decisions. Enjoy your Friday and goodnight!

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