We wound up going back up on the decadron yet again on Saturday. Logan's walking had deteriorated once again, so Adam called CHO and they said to up the dose. So much for getting him OFF of it. It seems like whenever we try to wean him from its grip, something happens and we wind up not only keeping him on it anyway, but increasing the dosage. Just one of the many, many frustrations we face.
The facial paralysis is still an issue. It's largely the same as it was last week, which breaks my heart into a million pieces. I know it's shallow, but I miss his smile terribly. It's the one thing that everyone always commented on: He's been through SO much but look at that smile! And now, at least for the time being, he doesn't even have that anymore. As far as I know, there's still no identified cause. It could be viral, it could be one of the many, many drugs he takes. It's hard to know for sure. The one thing that it could be that I find utterly frightening is Avastin. I did read, just before his MRI last week, that Avastin could, in very rare cases, cause one-sided weakness. If that's indeed the root of the issue, I don't know what we'll do. I've been praying and praying for God to just heal him already, to fix the damage and spare him yet more pain and suffering, but so far, nothing. I want to believe that as people who've been left with the Holy Spirit, we have the ability to move mountains. But thanks to some not-so-helpful stories that some well-meaning folks told me long ago, my heart won't grip onto my perceived truth of healing. It's frustrating, but I'm human. I'm weak. I have a hard time believing things that seem unlikely or, worse yet, ridiculous. If it IS the Avastin, it will take the hand of God Himself to heal his spine. I don't say that lightly, and it's true that 30 days in a hyperbaric chamber is actually the last-ditch option available, but honestly, what 5-year old do you know who'd want to do that? Not mine.
But anyway, this is rambling. Please keep praying for Logan's healing. He's really not doing particularly well, and I have no idea how to help him or how to make it any better. He's been tormented for over a year now and I just want God to make it STOP. Evil, begone already. Begone in the name of Christ, who came to save us.
What else can I say? Not much.
I'm so sorry Sherry. How disheartening. Ugh.
ReplyDeleteI am praying. Our whole family is still praying, and will not stop. I know that does not bring immediate comfort. I wish there was something we could do, that would. Just begging God to do that work...
Missed your reports over Thanksgiving. I was praying you were having a good holiday. Sorry things do not seem to be getting any better. Will continue the prayers...
ReplyDeleteDitto to Amy's comment. Praying still!
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