Procrastinating

Wow. 10 days. Pretty sure I haven't gone that long without blogging in a long time. And I didn't really notice it'd been a while until yesterday. When I stopped to try to remind myself what day it is.

See, I've been working a lot. Partly to make up for the lost income from Chris, and partly to cover the time we will be out of town this week and/or entertaining (read: trying not to overwhelm) family coming to town. Nights mostly. And not sleeping enough in between. So lot's of things have been pushed to the side for now, including being on the computer.

But then I realized that I have to actually write a speech if I want to come across at least slightly coherently when I testify before the FDA on Thursday, so onto the computer I logged. But not really knowing where to start, I started reading a few blogs, and then remembered how neglected my own blog had become, and, voila, here I am.

It occurs to me that I may not have mentioned this little detail about the FDA on the blog before now, since it was only finalized a couple of weeks ago, so let me backtrack.

Ella, as many of you know, was treated with a medication called ACTH last summer that was effective in eradicating her infantile spasms (so far anyway, 10 months and counting!). It was costly and not covered by our insurance (through the generous gifts of an amazing organization called NORD and the drug manufacturer itself, we were able to get her six-week course of treatment free of charge). The main reason our insurance company cited in denying the claim was that the Acthar was not FDA approved for use in infantile spasms and was therefore considered "experimental" (though it has been used to treat IS "off label" for more than forty years). So when we found out (through our ongoing involvement in the IS awareness campaign) that the drug company was petitioning the FDA for approval for Acthar in the treatment of IS and was looking for parents to testify about their children's experience with ACTH, we were immediately interested; it is our hope that with FDA approval, the medication will be more rapidly and readily available to the children who need it in the future. We formally petitioned the FDA to speak at the hearing, and our request was granted a little while later. After much planning and not enough speech-writing, the day is almost upon us.

In addition to not knowing what I will say before the FDA yet, I am feeling a bit unprepared in other ways. I need to pack for myself, pack for my children who will spend the night at the grandparents--including all that they will need at school, make sure I have properly identified my parents as authorized to pick up my darlings at their respective schools, not to mention trying to rendezvous with a few other parents of IS children while in DC.

I haven't a thing to wear to the hearing either. Sigh.

♦