Unwelcome return

12 Jan

I am typing wihtout watching my fingers.  My eyes are glued to Jade, watching her breathe as she sleeps.  She sleeps on a foamy mattress on the floor, curled a little, head resting on her arm.  She has a soft mesh net wrapped around her head. It tapers to a tube at the crown of her head, a tube that snakes down her pillow, loops back up and slithers into a purple backpack resting on the night table above her.

Jade is a cyborg for a day.  This morning we visited the familiar EEG unit, where she had the EEG leads glued to her head.  Normally she wears them for about 45 minutes, but today she gets to take a special portable EEG recording machine with her.  She’s calling herself Dora because of the purple backpack.

We’re back in Vancouver, all four of us.  Halia has become such a handful (and a half!) that I don’t know if we’ll do any more of these trips as a family, but I’d really been looking forward to this one.  Since we moved to the 5:1 ratio on Jade’s ketogenic diet back in October, I was almost sure that we’d eliminated the tonic seizures she’d still been having in her sleep.  I was excited to see what a 24-hour EEG would reveal.

Today, though, I have mixed feelings.  In the last few weeks of 2009, we watched Jade slowly deteriorate.  She was often pale, moody, and tired.  Sometimes her lips would turn blue for a few unexplainable minutes. We thought maybe she was iron deficient, perhaps even anemic.  As it turned out, she was suffering from the beginnings of liver damage, one of the potential side effects of the ketogenic diet.  The keto team immediately dropped Jade’s ratio from 5:1 to 4:1.  That doesn’t sound like much, but it’s a HUGE shift.  It took us a year to work our way up from 4:1 to 5:1, so jumping back down to the “dose” we started at is frightening.

That was last week.  We suspected that the tonic seizures were back.  We’d hear little hiccups or moans over the monitor.  Yesterday, we actually saw a seizure at nap time.  It makes me wonder how much of our hard work we’ve undone and how valuable this 24-hour EEG will be.

On the bright side, dropping the ratio got Jade’s appetite back on track, and she’s lost her pallor in favour of healthy pink cheeks.  We’ve been watching her development progress steadily, and she made another leap since we dropped the ratio, perhaps because her liver was no longer falling apart.

I am discouraged, but oddly not as depressed as I expected to be on seeing the tonic seizures return. I guess I still feel hopeful that the neurologist will have a brilliant plan when we see her on Thursday.  In the meantime, I’m busy watching Jade, making sure the leads don’t get yanked, recording any twitches I might see.  And, thank God, no tonic seizures so far today.  Yes, I still feel hopeful.  Even if my fingers are a little numb from being constantly crossed.

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15 Responses to “Unwelcome return”

  1. bubblybunny January 12, 2010 at 7:17 pm #

    Hang in there! I’ll be thinking of you and your family. I’m sending positive, healthy thoughts to little Jade!

  2. Beanie January 12, 2010 at 7:44 pm #

    You know, as difficult as it is, a situation like this really serves to remind us of the beauty (and innocence) of a child’s mind. You look at Jade and your heart breaks… Meanwhile, Jade looks at herself and sees one of her favourite characters.

    I’m praying for you guys!

  3. MommyTime January 12, 2010 at 7:49 pm #

    Oh, sweetie, I feel for you. Sending all the good thoughts I have, in the hopes that your little peanut’s tests come back with some good news.

  4. allmycke January 12, 2010 at 9:03 pm #

    Here’s more fingers crossed for you and your family.

  5. Megan January 12, 2010 at 9:24 pm #

    Thinking of you all.

  6. laura morning January 13, 2010 at 4:20 am #

    Praying for you.

  7. Lindsay January 13, 2010 at 1:43 pm #

    Take a break….i’ll cross my fingers for you for awhile….

  8. idnaia January 13, 2010 at 3:20 pm #

    Oh Fawn! I’m so sorry to hear about that, but I’m glad that you’re in good hands in Vancouver. I hope you have some good news from the doctors this week.

    Id.

  9. Kara January 13, 2010 at 7:37 pm #

    We are sending all of our positive thoughts and prayers to all of you!

  10. Cristina January 13, 2010 at 9:57 pm #

    Big hugs to you and Jade both! I hope the neuro can come up with something!

  11. Marie January 13, 2010 at 11:43 pm #

    Fawn, I am pulling for Jade and all of you – hoping that the 24 hour eeg brings good news.

    It is amusing that Jade fancy’s herself like Dora. Gracie was so excited when she got her ‘pack pack’ – just like Dora.

    Continued best wishes!
    Marie

  12. Tine January 14, 2010 at 10:08 am #

    Best wishes from Germany, too – keep us posted, will ya ?!

    ♥ ♥ ♥

  13. Cathy January 14, 2010 at 9:43 pm #

    Fawn – My heart is breaking for you but I’m so so glad you caught the liver issues. The Diet is so rewarding in so many ways but it is a fine line. I just feel my heart sinking as I read your post. I can feel it and see it as you keep looking out the corner of your eye for the twitches and the tonics. Yuck.

    I am glad that she is pinking up though and that her liver is back on track. What a great attitude she has about the EEG. They are not so fun sometimes! Love the Dora backpack.

    Hoping for a miracle for Jade and for your family when you meet with the Neuro.

    Call me when you get a chance. Pacific Time – 925-872-0449

    Praying for you all!
    Cath

  14. Andrea January 15, 2010 at 12:07 pm #

    Oh no! Wishing the best for Jade and the rest of you.

  15. Adventures In Babywearing January 17, 2010 at 3:48 pm #

    I’m so sad to hear this- I’m hoping all is well.

    Steph

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