Our appointment is for June 2.
Libby has had more pain and been whiney and miserable in the past month or more. Her nerve endings are pretty messed up so she may complain that her ankle hurts when it's really her knee. Keeping her on pain meds isn't successful as she becomes very moody, growly, and well not nice. We've tried several different kinds of pain killers and they cloud her brain in a way that isn't okay. The Libby we all know leaves the building. I don't want her in pain or uncomfortable, and I want her eyes to sparkle with her Liberty-ness. (Yea, I know none of this is about what I want.)
Botox helps, but there isn't enough alotted every three months to relax her upper body and her lower body. The Deep Brain stimulators do help as I've seen how completely rigid and locked she could be. Can't unsee what that was like.
We are doing a Baclofen trial to see if she can handle the muscle relaxer, Baclofen, being pumped into her spinal fluid. We tried several years ago and I freaked afterward because Libby couldn't walk or move her legs. That was when she was still walking. We don't walk anymore.
This appointment is the first step to getting a Baclofen pump inserted into her abdomen and a catheter carrying the muscle relaxer to her spine. This would allow her lower body to be pharmaceutically relaxed without having the high doses of the drug running through her blood stream and fogging her brain. With the Bac Pump we will be able to use all of the Botox in her upper body and that will be better all the way around. I also have some hope that the Pump might help with the ever increasing potty issues.
So, off we go. We haven't gotten final approval of her new wheel chair or the lift for the van yet. Hoping that'll happen this summer as well. But, we all know, my hopes don't matter I the grand scheme. They are just that; the silly hopes of one mom.
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