"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...

Monday, June 3, 2013

One week = 4 seizures

We wrapped up a busy week last week. We had family visiting from Florida, New Jersey and Colorado! Jim's brother and family, sister and family and his Aunt and Uncle were all here. Most stayed with Jim's parents but a couple of the kids stayed with us a few nights and there was constant activity the whole week! It was so much fun. Jim's parents had all of their grandkids here - all eight! Yes, eight kids 9 and under here on a VERY rainy week! Fortunately we were able to get them outside a few times and managed to keep them busy the days we were stuck inside.

Sadly, all the excitement was a bit much for Luella and she ended up having four seizures in that week. On the plus side we came to realize that we don't always need to rush the midazolam (rescue med). During the second seizure I gave her midazolam and immediately the seizure stopped - too soon for the midazolam to have stopped it. So the next seizure she had we waited a little longer. That seizure stopped on it's own! And the fourth seizure that week was the same - we waited and it stopped! This is great! She bounces back more quickly without the meds and I don't have to worry so much about not catching the seizure right away. Obviously I still won't leave her alone but I've always worried about not getting her meds to her right away because in the past the longer the seizure lasts, the harder it was to stop. She still typically needs a little bit of oxygen to get her through the seizure so we still have to be very alert to that as well. And we don't know if this will always be the case and the seizure will stop on it's own so I do have to be ready with meds. It's just nice thinking that maybe she can come out of these on her own more often now.

Another BIG exciting thing is that Luella was able to swim a week ago Sunday without having a seizure!! And she swam for a LONG time (an hour and a half) in a chilly indoor pool!! We had a surprise birthday lunch for Jim's mom at a new hotel in town and then all the kids went swimming. We were a little concerned because the water felt so cool but Luella couldn't stop talking about going swimming - she was SO excited!! We let her and I was on alert waiting as Jim slowly took her into the water. She was cold at first but then she was smiling and having a blast!! She smiled the entire time! It was so fun to see her enjoying something she loves without having it cut short by a seizure!!

Luella in her NEW swimsuit!

Having so much fun!

These are Luella's handprints. I made some handprint art to include in a memory book for Grandma Johnson. Of course Luella picked purple paint! ...just very fitting since a purple butterfly is the logo for the Dravet Syndrome Foundation.

I also want to mention that our thoughts and prayers continue to be with the Dohman family as little Clover lost her battle with Dravet on May 23, one month before her 4th birthday. Please pray that a cure will be found for this devestating form of epilepsy!