"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Sunday, June 30, 2013

A Summary of June / Tune in to watch....

I guess I pretty much let the whole month of June go without a post. I thought I'd give everyone an update on how Luella is doing. I've had lots of people ask about her. I want to let you know how much it means to us that you continue to keep Luella in your thoughts and prayers!!

Luella had five seizures during the month. Two of those seizures required her rescue med to stop. She did have a 9-day and an 11-day run of no seizures mixed in there so that was great! Even more great was that she didn't have any the week Jim was gone for work! I always worry a little more about seizures when he is away.

Luella's latest seizure was last Wednesday. We had taken Burke (our oldest) along with some friends to a pizza/arcade/play place for his birthday party. Luella was excited days in advance to go down the "twirly slide". When we got there Jim hadn't even set her down yet and her feet were running in the air!! Unfortunately she only got about five minutes of play in before she had a seizure. It was a pretty strong seizure and this was one that required midazolam. Toward the end of the seizure Luella somehow sucked her bottom lip into her mouth and she bit down HARD! It's amazing how ridged people can get during a seizure. I knew she'd bite right through her lip if I didn't get it out. I kept trying and finally got it out! She had some big dents in her lip for quite awhile and she did end up biting through the skin a little. I keep thinking of how much worse it could have been. Little Luella ended up sleeping through most of the party. She woke up enough at the end to have a few bites of pizza and some cake. I was so hoping she would make it though the night without a seizure - especially since she had one the night before also.

June did have a few fun things for Luella. Luella enjoyed playing with another little girl with Dravet in our own backyard! We met a family at the Dravet Conference last summer that have relatives in our little town! They were here for a visit early in the month and stopped by one afternoon to play. Melanie and Luella had lots of fun together, despite Luella not feeling the greatest from a cold and Melanie recovering from a seizure earlier in the day.

Luella and Melanie

I also want to mention something you might want to tune into on Monday and Tuesday. There will be a piece with the Realm of Caring and the Jackson family (Zaki) on Monday evening on the NBC Nightly News with Brian Williams and then again on Tuesday morning on The Today Show. Zaki doesn't have Dravet Syndrome but a different form of severe epilepsy. At his worst he was having 200 seizures an hour!! Since he started taking medical marijuana he has not had one seizure!! This is an amazing story, one that needs to be heard so all states will realize the healing power of this amazing plant!

Here's a video about Zaki and Charlotte (a little girl with Dravet) and the success they have had with medical marijuana...


  1. Due to all the big news happening yesterday and today, Zaki's story will now air Tuesday night on the NBC Nightly News with Brian Williams and Wednesday morning on The Today Show.

  2. It's always so sad and frustrating when a fun, anticipated event is interrupted by a seizure!
    So glad she got to play with Melanie :) It's always fun to get together with another Dravet family!

  3. There has been too much news the past 2 days so Zaki's story did not air tonight and will not be on the Today Show tomorrow. It might be next week now. I'll keep you all posted. Thanks!

  4. I could not find this story about this boy with 200 seizures in 1 hour on youtube but I saw the commercial that it would be shown on nbc nightly news.

    1. The video from YouTube is above, at 6:20 into the video Zaki's mom says that he was having 200 clinical seizures in one hour. If you are having trouble viewing it, here's the link to the video on YouTube - http://www.youtube.com/watch?v=BH5yzEu3JGQ&feature=youtu.be&t=6m20s.

      The story on the news got bumped because of all the other big news this week. They plan to air it next week sometime (possibly Mon or Tues). I'll let you know when it is scheduled. :-)

  5. It already played on the NBC Nightly News on 09JUL2013. A longer version should play tomorrow (10JUL2013) on the Today show. The NBC Nightly News video and a more detailed write up are posted here: