Thursday, August 1, 2013

10% and 1/3

July stunk as far as seizures go...

He set a couple of records for himself.
9 is the most he's ever had in one day...then to have 4 the next day and 5 the next.?!?!
For some Dravet kids these would be good numbers but for Ben they are not.
We got worried that his seizure pattern was changing and that he would be having multiple large seizures daily from now on.  Thankfully, after a few days things got back to normal.  Now it's been 8 days since he had his last one (I guess that's not normal either :(  What's normal?  Who knows.).
We did a lot of this this month.
 30 tonic clonics in July...another record for one month.
Ironically, his last one was #301.  
{When he first started having seizures I take note of each one on my little calendar that I have now, but when I decided I wanted to keep track of numbers I went back through my journal and tried to figure out where we the number 301 is possibly not exact but a fairly good estimate.}
Andy pointed out that that means Ben's had 10% of all his tonic clonics in this last month.

While July was such a bad month for seizures it was wonderful month for fundraising :)

We received an anonymous and very generous contribution in our mailbox.  My cousins' kids did a lemonade stand and then my cousins added more money to the kids' earnings. Some girls in my ward did one also and contributed some of their profit. My good friend's kids went door to door to raise money for Ben's research fund and then did two bake sales with their friends the next week!  Together, this last group of kids raised approximately $250!  I wish I would have gotten pictures of these amazing kids when they came to our door to deliver the money.  They were so cute and said how much fun they were having. 
Bless them!...bless all of these sweet people!
We are almost a third of the way to our $30,000 goal!


  1. Bless that little guy's heart--and yours!
    I am grateful for the generosity of friends and family. : )

  2. I'm catching up on your posts since the Holland one. I love, love, love seeing all the pictures of your family!! You're a grand one!!!! How wonderful to still be able to spend time with your grandparents - my children do not have that blessing.

    Hugs and Blessings!!

  3. Hopefully August brings fewer seizures (really, like none).