Little Luella: March 2016

Sunday, March 20, 2016

She's an International Star

I'm happy to be writing a blog NOT about a seizure! Actually, Luella is just over 2 weeks seizure free and we hope to add several more weeks to that!

I wanted to share a special little spotlight that Luella had bestowed on her back in February. The International Bureau for Epilepsy held a photo competition with the theme 'Yes, I Can' to demonstrate achievement in overcoming obstacles. They wanted to showcase the best entries for International Epilepsy Day on February 9th. A select few were exhibited in the European Parliament in Strasbourg, France from February 1st through 5th. Luella's photo did not win the competition, but I knew I had a good one to enter and the judges thought so too. Her photo was one selected and displayed in the European Parliament!! It would have been fun to be there to see it in person. I got to see several pictures of how the photos were displayed. It was a special honor to have Luella and her story included!

This was Luella's piece of one of the posters that was displayed.

You can see Luella peeking out behind this lady! These posters were BIG!!

This is the hall in the European Parliament in Strasbourg, France where the photos were displayed.

All the photo entries can be viewed here: http://epilepsy.org/gallery/

Your next opportunity to wear purple and bring some awareness to epilepsy is March 26th which happens to be Saturday! It is Purple Day for Epilepsy Awareness! If you have a chance to wear purple and tell people WHY you are wearing purple... that would be AWESOME!! Share a picture with me if you want to be included in my yearly purple video AND Luella always loves seeing her supporters wearing purple!! Thanks everyone!!

Tuesday, March 8, 2016

Random Seizure

Just a quick note to let you know that Luella had a seizure on Saturday night just after falling asleep. She was just a few days short of 4 weeks seizure free. She didn't have any fever or anything that we would expect to trigger a seizure.. just one of those random seizures. We are praying for a long run of seizure freedom!! 10 weeks would get us just about to the end of the school year!

The seizure on Saturday did require 2 doses of midazolam to stop but thankfully she woke up on Sunday morning just as happy as can be! Jim asked her about her night, wondering if she had any memories of the seizure. All Luella had to say was that she had a dream about riding a brown horse! We thank God that she doesn't have terrible memories of seizures and that she can recover so quickly and be our happy Little Luella!!

About Me

My name is Heather and I am mom to Luella and three other children - Burke, Ashlyn and Ryker. Luella is our youngest and in August of 2010, when Luella was only 9 1/2 months old she had her first seizure. We were told it was probably just due to the UTI they discovered and she may or may not have another seizure. She did have another and went on to have almost 50 in the next year. Through constant doctoring we found out in July 2011 that Luella has Dravet Syndrome. This was hard news for us to hear. We are praying for the best possible outcome for Luella and we ask for your prayers as well.