Friday, October 7, 2016

Doogie Howser, Sophie and The Tiny Little Mother Mind

One very fucked up EEG

Doogie Howser and I had a good pow-wow over Sophie. The plan is to hopefully get her back to baseline (which is never normal, so don't be overly alarmed by that EEG) with a giant dose of Vimpat. You might recall that we reduced Vimpat because we thought the giant hives were a toxic reaction. Maybe not, though. We also discussed the possibility that when The Evil Insurance Company switched Sophie's hormone med to a generic version six weeks ago, it might have thrown her off and exacerbated the situation. Anything is possible, apparently. We're in a very sophisticated medical building with all the fanciest equipment and greatest minds, including this tiny little mother mind, yet no one really knows what's going on. I am of course struck by how much has changed in that the video monitoring equipment is wildly informative, and I can take a picture of it with my tiny phone, yet little is changed from twenty years ago as far as treatments (the drugs! the drugs!) for Sophie. Last night, in conversation with the doc whose name rhymes with Kevorkian (how perfect, I thought, and unfortunate), I casually suggested in my dark way that instead of asking me what I wanted to do, we should just put a dart board up on the wall with our options and throw darts at it. The Doctor Whose Name Rhymes With Kevorkian looked at me like I was insane but tittered. The nurse, of course, burst out laughing. Later, he brought in a whole stack of consent forms for me to sign, and when I asked him what I was signing, he said it was for the video telemetry, and I said that I wanted to be sure that it wasn't for a hemispherectomy, and he looked startled and I said, I don't really trust you neurologists, you know, and we all had a raucous laugh. This morning, Doogie Howser claimed to be a "believer" in CBD. I told him it wasn't a religion, but I got the distinct sense that he was cool with it. Y'all know the party line. I think The Party really wants to get Sophie back to the control she had on Onfi, Vimpat and CBD but The Line is to "ignore" the CBD. The tiny little mother mind is on it, not walking The Line, as usual. I'll keep you posted.

Sophie is sleeping right now.  As you can tell, I'm ok. Strangely calm which might perhaps be dissociative but could also just be -- well -- calm. 


  1. Keep your humour, keep reminding them you're all human. It's good for them. The thought strikesme that you are exactly who you need to be.

  2. Sounds like for the circumstances, things are going as well as they can be. I'm glad you have that particular doctor. He may not be quite as onboard as he could be but it sounds like, for a neurologist, he's pretty okay. I am quite certain that he is learning a lot from the Tiny Little Mother Mind he is being exposed to. I like what Jo said- you are exactly who you need to be. And exactly who Sophie needs you to be. All of this because of who you were at birth and what you have learned in such difficult ways for the past twenty years. And still- your sense of humor saves you. I wonder if you have any idea how much I respect and admire you?

  3. Calm is good. Calm is good. Remember you can put some wine in a coffee mug in there.

  4. You are so funny in a very unfunny situation and I admire the hell out of you for that. You may have a Tiny Little Mother Mind™ but you have a Big Huge Mother Heart™. I am sending love to that part of you. I hope you are getting some rest.

  5. Hospital humor is fabulous -- especially when the staff get it and join in (usually the nurses, NOT the docs). Savor your have done everything possible and now it's waiting to see what comes next. I love your candor, your mother mind and heart.

  6. Your hard-won savoir faire is good for everyone there – moves things forward in a good direction.


  7. BeckyOctober 7, 2016 at 5:16 PM
    My nurse sister had to do a bunch of hormone meds for a condition she had, and swears that the genetics messed her up

  8. That's the Elizabeth we know. I'm glad your manner keeps them on their toes and I am so very glad that there is no panic in your voice. That sweetheart of yours hit the jackpot when she got you for a mother, Elizabeth. And I so admire your ability to stay as much in the present as you seem to be doing.
    Hope you are getting some good sleep and eating what you need to eat, which could contain sugar, fat and possibly whiskey.
    Thinking of Sophie.
    Love to you both.

  9. So glad to see this post. I hope baseline will be achieved soon. Sounds like Doogie's in your corner. Hopefully you will get some rest. Xoxo

  10. It's amazing 'how you do it'.

    I have a question. What is it that makes you still believe that the CBD is still doing any good - seeing as Sophie has been such a hard time lately?
    To make clear: I know nothing about epilepsy and are from The Netherlands - CBD is no problem here and everyone is free to use it as they see fit. I just wonder.

    sending much strength to you and Sophie

  11. Keep calm and carry on. You are so on top of it. Sending you strength and patience.



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