Thursday, March 4, 2010

Roller coaster

After I posted last night post things went downhill.

Emily had 5 spasms/seizures all day yesterday and just this morning from midnight to 9am she had 7. (9 total so far) The longest one was over 50 minutes long.

I gave her all the medicine I could give her and she just passed out eventually.

I called the neuro as soon as they opened at 8:30 and they said to up her klonopin back to three times/day and increase the dose. So far so good.

She doesn't usually start having increased or longer spasms until around midnight so we will see if the med increase helps.

He also said we don't have many other options, which was hard to hear. Our next step is the ketogenic diet and a g-tube.

I am going to give her through the weekend to see if the sabril will help or not. If on Monday we decide to start the diet she will be admitted again to start the diet to make sure her body can handle it and I am sure they will go ahead and do the g-tube placement while we are there.

She is super smiley today too! It's so cute, she can hardly keep her pacifier in her mouth because she keeps smiling so much.

I got this picture earlier on my cell phone.


  1. This hurts me so very much to hear.
    I'm wondering if she has not been on the Sabril long enough for it to work well with her. I'm not sure what a g-tube is but I sure dont like the sound of it and I hope she wont have to have it. I am still praying very hard for my precious grandbaby. I see her beautiful smiling face and all I want is for her to be happy all the time and not be in the hospital any more or have tubes in her. Lord, please hear our cry and heal our baby Emily!

  2. Her continued joy despite what she's going through inspires me. Not to mention, she's just about the most adorable girl I've ever seen!

    Hallie :)

  3. You guys are in my heart and prayers!

    What's the word on the referral to cleveland?

  4. Erica, you know my heart goes out to you. That sweet baby can't catch a break. We will keep praying for her. I plan on coming to see you Sunday afternoon with her new Boppie. If you are back at the hospital (I hope not) I will just come there after church. Love you all!

  5. The first thing I do every morning is log onto your blog to see Emily's progress. We are following your journey and wish only the best for you, Joe and Emily. We love you all.
    Neil and Susan

  6. I can't seem to figure out how to leave a post. We love you all

  7. I showed Ricky that smiley face on my phone & he just held it & looked at it for the longest time...we all love to see that smile on her face... I know its what keeps you all going!