"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

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!

1 comment:

  1. So glad that Luella got to spend some time doing things she enjoys and so glad that she might not need the meds as much! That is a big plus :)