And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Tuesday, January 28, 2014

Closed dooor, open window?

As B mentioned in the previous post, we were hoping for an "open window" yesterday afternoon with my neurologist, after the closed door we seemed to receive with the neuro-immunologist.  However, he basically said that he didn't really see that there was much to do but live with seizures for the rest of my life and try new meds any time they come out and see if they work better than the other 12+ meds we've already done.

We brought up the idea of any other newer choices or options.  The options seem to be bleak.  The "aha" moment that we were hoping for just doesn't seem to be happening.  He finally said we could talk to a neurosurgeon about a Vagus Nerve Stimulator.  So, they are going to try to get that set up for us.  However, that is a permanent implant that attaches to your vagus nerve and triggers something when a seizure starts to try to shorten it.  It's kind of like a bark collar for a dog.  Every time I seize, I run a magnet over it and it trains my body not to seize.  They say it could take up to a year to get it set up and they would expect a 1-2% success rate.

I think the tough part is that we walked in to these appointments with a great deal of hope that we were on the road to answers.  That it wouldn't be too long before I could just have Mommy & Miss P time where she doesn't have to be in a highchair or grocery cart strapped in....that I could be a wife to the most amazing husband ever and that I could be a daughter and any other role I'm called to be playing in life.

So, we start over today with a brand new list of docs to see if any of them see anything glaring that has been missed before...

Thank you for your precious prayers for us!

Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:4-6

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