The lowdown

20 Jan

I was going to write an eloquent post about weekly blood draws and all the fun we had today, trying to get that particular chore done (it involved forgotten paperwork as well as getting stuck in soft snow which necessitated shovelling myself out, which is always a joy, of course) but now it’s almost midnight, so here’s the quick and dirty version for you worriers out there.

Dr. Huh’s hypothesis is that Jade got a virus that was sort of the last straw for her liver, which admittedly works hard on her high-fat diet.  Jade’s been having frequent bloodwork, and we can see that her liver enzymes are moving in the right direction since the change to 4:1 (hurrah!). Once the liver enzyme numbers stabilize, we’ll jump her back up to the 5:1 ratio where her seizure control was, we think, nearly perfect.  That can likely happen in just a week or two.

The 24-hour ambulatory EEG was informative, even though it didn’t happen at the 5:1.  For one, we found out that Jade is having NO SEIZURES AT ALL, during her waking hours, not even subclinical seizures.  Hallellujah!  That is wonderful news!  Also, during the EEG Michael and I wrote down every twitch and sigh we observed that might be a seizure in her sleep, but there were only a couple of real seizures — the rest were normal twitches that we all have in our sleep.  So that was more good news.

So here’s hoping Jade’s liver stabilizes quickly and that it stays happy (and that Jade does, too!) when we switch back to 5:1.  Here’s hoping!

(Thank you all for your good wishes and prayers.  Thank you for caring so much about us.  *smooch*)

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9 Responses to “The lowdown”

  1. bubblybunny January 20, 2010 at 3:57 am #

    Excellent News! Very happy for you and your family! 🙂

  2. Jenny January 20, 2010 at 5:31 am #

    I know about those night twitches! I feel them once in a while with Naomi but I know they’re just normal. I have them too. But still, you worry. She sleeps like a rock, so I’d be surprised if she had any real seizure activity when she’s sleeping. Still abnormal EEG but no seizures that actually move her body.

  3. Megan January 20, 2010 at 6:45 am #

    Whew!

  4. taibhsearachd January 20, 2010 at 7:08 am #

    That is such good news! Thanks for the update Fawn.

  5. MommyTime January 20, 2010 at 5:21 pm #

    YAY! I’m so delighted for you. I have been fretting and wondering. I hope that the good news continues and her liver improves rapidly. Thank you so much for posting an update. Sending hugs.

  6. Marie January 20, 2010 at 7:17 pm #

    Yeah! Glad to hear the good news! Also, very glad that the liver issue was most-likely related to a virus and is clearing up. Thanks for sharing 🙂

  7. christiane January 21, 2010 at 1:11 pm #

    Yay!! So happy to hear the good news! Good luck going back to the 5:1 ratio

  8. Opa January 21, 2010 at 1:58 pm #

    I think the heading of this post should have been “High Up”. After all the worry of the past few weeks, this is a HUGE relief.

  9. Cathy February 2, 2010 at 9:57 pm #

    Fawn – I so happy to hear about the EEG!!! I love that! Your daughters are so beautiful and spunky. I’m catching up on your blog and loving it! You are great! This is great news.

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