Wednesday, February 2, 2011


We are preparing for the hospital tomorrow. Emily will be admitted for a day or two and have an overnight video eeg so see whats going on with her seizures and to start ACTH again.

Emily is weaned off the ketogenic diet now because we have decided to do another round of ACTH.

If you remember it was the very first medicine we tried when she was diagnosed with IS.

This is what it did.
She got very swollen, stopped smiling and well stopped pretty much everything else.

We are very aware of the risks but we also are VERY aware of the risks of uncontrolled spasms and seizures.

We have postponed her surgery until the swelling has gone down, so probably some time this summer is when she will have it.

So I ask you tonight to please pray. Pray that we can get our miracle. Pray that we can control these horrible, life altering, life ending seizures.

We are desperate for a cure.


  1. I am so sorry that you all must once again make those difficult decisions.Precious little Emily gets my whole-hearted prayers.I hope that she will respond well to the medicine without the swelling this time. Please know that for her to smile is the most wonderful gift to us all. I pray we can see her smiling and back to herself ASAP!!! Thank you for sharing your daughter and your hearts with us. We care and we love you all so much.Sleep well tonight and keep us posted.Thank you, Toni

  2. I will be praying for you Emily!!!

  3. I am thinking of you guys - I hate hate hate seizures - and hate what they did! I hope you have some success with something soon.

  4. Erica...I hope things go really well!!!
    You are doing an amazing job and Emily is so lucky to have you guys working so hard on her behalf. Praying you have tons of success this time around!

    Huge hugs and prayers!

  5. I called today to talk to Emily on the phone. She wasn't much in the mood as she was already in the hospital. I don't blame her. You told me earlier that she would not smile much, cry, make sounds or much of anything during the second round of ACTH. Will miss hearing her sounds. I love talking to Emily on the phone, hearing her sounds...screams. :) I know we will get to do this again soon. Love you, Mamaw Rollins