Amelia's neurology appointment on Tuesday bore some bad news. Aaron and I were right, the symptoms are subtly but surely returning as we weaned the steroids yet again. She was placed back on a stronger dose of steroids to keep the swelling and demyelination in her brain at a minimum. The longer she goes without healing, the more question there is about an underlying condition, or permanent brain damage. It is beyond heartbreaking to imagine our perfect, beautiful girl growing up unable to track with one eye, falling over and crashing into things, requiring six hour naps, having language and small motor skill difficulties. It is so hard to think that she may have permanent disabilities because of an illness that so suddenly, mysteriously struck out of the blue.
Yet I trust she is in His hand. He cares so infinitely much more about this dear child than do I. Hard as that is to imagine.
Keep Amelia in your prayers, as she is throwing up occasionally, having the afore-mentioned subtle changes that indicate increased swelling or demyelination, and taking longer and longer naps each day. Weird how, with one bad experience, you constantly feel at the edge of an unseen precipice. My pain continues as well, unresolved. Hoping the infection isn't taking stronger hold in my abdomen. Praying some doctor, somewhere, will someday have a clear answer and God will heal me.
1 comment:
How our hearts long for better news. We will continue to pray.
Please be sure to rest when you can. Love, mama
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