"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, March 23, 2015

Always a seizure...

We pushed our luck on Saturday. It was Ryker's 8th birthday party and we took a group of kids to a fun arcade / play place for his party. Luella was SO excited to go there. She is always asking to go to the Brandon Pizza Ranch since the arcade is attached to the pizza place. She loves to play there but ALWAYS ends up having a seizure. She has not ONE TIME been able to play there without a seizure. We were hoping that she would do better this time.

We did some party games and had our pizza and cake first before we let Luella play. In the past we've let her play right away and then she has a seizure and is out the rest of the time making it difficult to eat, etc... This time we timed things differently. After eating and watching Ryker open his gifts we let Luella loose to play. Jim was on "Luella-time" as I packed up the party things to clear the room for the next party. He carefully monitored her playtime so she would play hard for 10 minutes then take a break and do something less intense. It appeared to be helping and she got in a good amount of play. Then literally just 2 minutes before we were going to leave - she had a seizure. She was in one of the inflatables - probably about the safest place to have a seizure. I was in the restroom at the time so Jim crawled in to grab her. The seizure was a tonic clonic (grand mal) and got the attention of several of the parents and kids playing there. We visited with a lady who had lost her daughter-in-law less than a year ago to a seizure. So heartbreaking! Thankfully Luella's seizure stopped on its own after just a couple minutes. Luella has not needed to use a rescue med to stop a seizure since her Make-A-Wish trip back in October!! That is just amazing!! We are SO thankful for that! Unfortunately thought it had only been 2 weeks since her last seizure. We are praying for another long seizure-free stretch!!

Here are a couple of pictures of Luella enjoying the party!

Ryker's party theme was mustaches!

Luella's first time running a bumper-car on her own!

Don't forget to wear purple on 
Purple Day for Epilepsy Awareness!! 

Tuesday, March 17, 2015

When to Wear Purple?

So you all know that PURPLE is the color for epilepsy awareness, right? If you don't, now you do! Purple also happens to be our Little Luella's favorite color! Works out nicely. Do you ever wonder when you should wear purple to show support for epilepsy and Dravet syndrome? The easy answer is ANYTIME you want! :-) While you can wear purple anytime, there are a few special days devoted to epilepsy awareness and Dravet syndrome awareness. The first of these special days is coming up soon. March 26th is Purple Day for Epilepsy! Wear purple on Thursday, March 26th and read more about this special Purple Day initiative at http://www.purpleday.org/index.html.

The next special purple day is closer to our hearts as it is the Dravet Syndrome Awareness Day. This day is June 23rd. This year will mark the 2nd annual Dravet Syndrome Awareness Day!! We are excited that Dravet itself has a special day and we hope you will all mark it on your calendar and wear purple for Luella and those affected by Dravet syndrome! Read more about it at http://www.dravetfoundation.org/archives/events/dravet-syndrome-awareness-day.

Finally the ENTIRE month of NOVEMBER is Epilepsy Awareness Month!! So wear purple anytime in November and help spread awareness for epilepsy! More about it at http://www.epilepsy.com/make-difference/get-involved/national-epilepsy-awareness-month.

Thank you for your continued support!! I love seeing these Little Luella shirts worn randomly by so many of our friends and family!! If anyone is interested in ordering a shirt, please let me know. If I get enough interest to keep the cost down I will place another order before June.

Tuesday, March 10, 2015

Update: Great February but seizure at school on Friday.

It's been SO long since I've written a post! I guess that's mostly a good thing. Luella had a terrific February! Not one seizure the whole month! It's such a blessing to have a more "normal" life and not having to deal with weekly seizures like we were before starting Luella on Diamox. I say "normal" because life really isn't ever "normal" but we enjoy it as much as we can! :-)

Luella ended her seizure-free streak on Friday with a seizure at school. She went FIVE weeks! This was her second seizure at school. We are so blessed to have such caring and watchful people with Luella while she is at school. Luella's class was having some play time on the playground and Luella was having lots of fun. It's hard to know what the trigger was - too much excitement, over-heating, sun, cold air, etc....  Luella also woke up that morning with lots of sneezes and a runny nose so it could have been the fact that she was getting sick. The important thing is that everyone did exactly what they were supposed to do.

I was running a few errands downtown when I got the call. When I got to school they had cleared the playground and Luella was on the ground with many teachers and the school nurse around her. She was nice and cozy as a couple of teachers had given up their coats to keep her warm. At that time it was right at the three minute mark when her rescue med (midazolam) would have been given. Thankfully her seizure stopped on its own and no rescue meds were needed. Jim arrived shortly after and we got Luella loaded up and home again. Normally she doesn't sleep so much when she doesn't have midazolam, but the seizure - and I think the combination of her having a cold - really wiped her out. She slept about an hour and half then kind of woke up but then was really sleepy all afternoon. She really didn't perk up until about 5:00 that night.

Luella is still dealing with this cold but has enjoyed playing outside a few times over the past few days when the temperatures here have gotten so amazing! We are ready for summer!!

Thanks for following along and keeping up to date on all that is happening with Luella. We appreciate all the thoughts and prayers! God is good!