Saturday, May 21, 2011

hard day

I wish this were a happy, fluffy, everything is great post-it is not.

14 weeks spasm free came to a screeching halt this morning.

The first arm flailing, heart sinking jerk was obvious and very painful to watch.

We are heartbroken and devastated. We knew it could come back but were praying it would not.

So far she has had two clusters.

She does not have many other options left.

We will keep fighting but tonight we are weak and hurt.


  1. Wow I hate to hear this... I am so sorry. I'm still praying!

  2. I am so sorry. My heart dropped when I read this. I don't know what to say other than .. damn. :( Please hug your sweet girl from me.

  3. I love you guys. I'm so very sorry. Any chance could disappear again after a short spurt of them? Still praying for them to be GONE, and for God to give you what you need to deal with everything. Love you both so much. Lisa French

  4. i feel so bad for you guys The second round of ACTH seemed so promising. She looks great and I hope you guys find your miracle drug!

  5. My heart broke reading this post. Praying hard that this was an isolated bad day.

  6. Sometimes my daughter is seizure free for a month than it comes back. It just sucks! But we have to continue to fight this battle. Please know your family are in my thoughts.

    Take care and know I totally understand your feelings, Nicole from CA.

  7. Poor Emily! I was hoping that the ACTH would work this time. I'll be praying that can find something that works for her. We are still trying to find that for Jackson.

  8. Praying it was a single incident, a "breakthrough seizure"....praying for no more, today is a new day...hoping for a much better day!