Saturday, January 18, 2014

Starting Over: Day 3

Well, you would think that after 9+ months of no posted updates and having left off at one where N took 4 unassisted steps that I'd have some incredible news about progress...but I don't.

As a matter of fact, we had soon after found that we had plateaued...then N began losing motivation. We stopped the minerals believing there was no reason to give them if there wasn't anything left to come from them. And then over the past 9 months someone grew quite a bit, which is not so great for kids with CP. The end result? Loss of muscle strength, tighter hamstrings, loss of motivation, and we were 2 weeks away from her undergoing hamstring release surgery and possible de rotation of her legs. (but btw, her heal cords did not tighten back up, she still stands with a flat foot)

I ordered the minerals again hoping it would help with recovery after surgery, they arrived just 3 days ago. That very same day a trusted friend and therapist told me that she had begun to think differently about the de rotation surgery and perhaps N's situation is not severe enough for such a big surgery (it is something the doctor wanted us to consider too but agreed that we had several months to consider, and now here we were less than 2 weeks away with a possible plan change). My heart dropped. I don't want to make the wrong decision or a rushed decision. I immediately started her back on the minerals and decided to reschedule surgery for 7 months down the road (knowing I can always cancel it) and decided I wanted to change our approach to therapy.

In short, I want N using a walker and on the minerals. I could give a long explanation as to why but don't feel that is necessary right now, but will if asked.

In any case, it is Saturday morning. N started using a walker on Thursday and started the minerals on Thursday as well. This morning my mind is blown; her hamstrings feel MUCH looser than they have been! I am so incredibly excited about the potential of her experiencing the same kind of huge, quick progress again but this time with a different approach. I think the walker will help her tremendously and psychologically keep her motivated and seeing herself as a walker, as well as building muscles she wouldn't be sitting in a wheelchair.

I do not intend to keep a spreadsheet tracking progress daily this time but do hope to update this blog again on occasion.

Praying we won't even need to entertain surgery a few months down the road.

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