Friday, May 13, 2011

Perhaps it's just as well

that Blogger has been down for nearly two full days, wiping out the last post -- at least for me. My last post was a recounting of a terrible moment with Sophie as she seized outside of a tennis court where Oliver was having a lesson. Sophie had been doing very well -- the new medication appeared to be helping her immensely. During the last couple of weeks, though, the big seizures have returned, and while it's still not that bad, in the scheme of things, we decided to raise the medication and see if that helps. She's now on about the biggest dose that she could be on which makes me half-hopeful and half-insane. As she reached for her drink this morning and overshot, I wondered if she saw double. I helped her back to her room after breakfast this morning and she literally fell into bed and sleep. She's still sleeping now, and I'm wondering if we're poisoning her. I'm wondering if the medication will kick in and the seizures will stop. I'm wondering if she'll become tolerant of the side effects or not.

I'm wondering if I'll ever stop wondering.

13 comments:

  1. Oh Elizabeth, so sorry that Sophie's seizures are back. I did see your last post on her seizure during Oliver's tennis lesson, so it was at least posted before it was lost. Hope the weekend fares better.

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  2. Dear Elizabeth, science is so imperfect. I'm praying and hoping with you that the seizures will stop. I did see your last post, I commented on it, because I was so very moved by the vision of you holding Sophie, protecting and cradling her, while also giving Oliver what he needed, your mother's heart torn almost to shreds, yet keeping on, always keeping on, giving each child what she or he needs, loving them so. You are amazing and wonderful and I know it is hard, but you will just keep doing the best you can and it will be enough, it will be everything. But do take care of you, too, dear friend. Holding you and sending love. God bless.

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  3. wondering and hoping for both you and Sophie....I wish you fewer side effects and better anti-seizure effects...PS.. Ilove the mug - feel free to sell us anything you like if it supports Sopie INC.( looks like that post disappeared too..)

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  4. I do hope the increased dosage will have the effect that Sophie deserves without ill side effects. I can only imagine the frustration and wondering for both of you.

    Best,
    Bonnie

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  5. Stop wondering. This is not a piece of advice but a suggestion. Our minds are some time friends and some time troublemakers. Nana used to say that to worry about something was like a prayer for something you didn't want to happen. I stopped worrying about my cancer and Barry's cancer when I realized that I was doing everything I could to keep the beast at bay. Other than that, hope that as I told you, I cling on to like a child to a swing.

    Nurtured by what? more hope. It may not be rational but it sure makes life a bit easier to maneuver
    across the deeps and canyons.

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  6. Allegra -- Yes. Stop wondering. I think I should try it. My mind inclines toward wonder, and perhaps in this instance, I should stop. Thanks for the inspiration -- as always.

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  7. I can say it no better than Allegra. I will simply add, I hope you find some peace.

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  8. what angela and allegra said. they said it so well. and hoping/praying, that something will help, and keep on helping. always hoping for better times, for all of you...

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  9. Betrayed by blogger! I was going to leave a note on your post about Sophie at the tennis courts - your readers left such beautiful comments and I was so touched about the frank look you gave your life, eyes shut or no, while I've spent the last couple weeks avoiding any hard thinking, I found it... hopeful? uplifting? A bright spot in my day.

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  10. Waiting, waiting... what more can we do sometimes. Sending you both an extra dose of healing, Mama love

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  11. It's hard not to question what's right for our kids when medication can be such a crap-shoot. And then, once one of them looks even a weency-bit promising, there's the cost-benefit analysis.

    Sending over good vibrations...

    Word verification on the post mentioning the post you lost? reworn

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