"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, 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!!

Tuesday, February 9, 2016

2 Seizures and Roller Skates!

I was hoping to write a post about exceeding our last seizure-free stretch but it wasn't meant to be this time. It was 9 weeks exactly. Luella had two seizures during the night last night. The first happened just minutes after she fell asleep. I heard clicking on her monitor and then the alarm sounded and I knew she was having a seizure. She was hot. Temperature of 100.4. It was hard to know if her temp spiked because of the seizure or if the temp caused the seizure. Sleeping seizures can be more difficult to stop but thankfully after one dose of her rescue med it stopped. She drifted off to sleep and we closely monitored her during the night. At 4:30 the alarm sounded again - another seizure. She was quite hot and sweaty again. Temp was still up. Obviously she is battling some bug. This seizure stopped on it's own. Unfortunately we had to change bedding and give her a quick bath - which isn't fun after having a seizure at 4:30 in the morning. I got her bed put back together and we got her tucked in again. She did sleep a bit but was wide awake at 5:30. I never got back to sleep. A nap might be in our future today.

You'd think being up since 5:30 AND having a couple of seizures during the night would slow you down.... Not Luella! She's been a jabber-box this morning and has been wearing roller skates since breakfast! Not one sign of an illness except for a fever. We will check out the potential for a UTI today and hopefully she'll be fine with no more seizures! We want to be on our way to a record seizure-free run!! To put this latest seizure-free into perspective... during this exact same 9 week stretch 2 years ago - Luella had 8 seizures. We are SO grateful for everyday without a seizure!!

Thanks for your thoughts and prayers!

I know this weather hasn't been ideal, but Luella is enjoying it! We made a snowman on Saturday!!

Luella and our Snowman!

Saturday, January 2, 2016

Ending the Year Right!

Well we've said goodbye to 2015 and it was a GREAT year!! In past years Luella has averaged about 50 seizures a year... in 2015 she had a TOTAL OF 15 seizures!!! We feel so blessed! God is doing some great things and we can't wait to see what 2016 has in store! We want to thank you all for your continued support of Luella and helping us raise awareness for epilepsy. We love to get the tags on facebook or emails showing all the purple love! It warms my heart to randomly see someone wearing their "Little Luella" shirt! We can't thank you enough!

A quick update - Luella will be four weeks seizure free on Monday (Jan 4th)!! She had an amazing Christmas break and we are going to continue working our way back up to 10+ weeks of seizure freedom! Thanks for your continued prayers!

Once again I've put together a little video showcasing all the purple pictures that were shared with me this past year. I HOPE I didn't forget anyone!! If I did, please know it wasn't intentional. I try to save every picture shared with me during the year but sometimes I miss a few. Get those cameras ready for purple this year and keep sharing!! Love you all!

 Link to video on YouTube: https://youtu.be/SUNQfqu6vCY

Monday, December 14, 2015

She got a new bed!!

There was some super exciting things happening in Luella's world over the weekend!! She FINALLY graduated out of her "crib bed" into a "big girl bed"!! She has been telling me for some time that she really needed a new bed. :-) Things were getting a bit "snug" for her in the toddler bed! Actually it was only February when I finally removed the side of the crib to turn it into a toddler bed. I guess that was my over-protectiveness in action!! On Thursday I was able to pick up a new bed in secret and got it all set up with a new headboard and everything on Friday. Friday after supper was the big reveal and she was SOOO excited! You have to watch the video (scroll down) ... it'll put a smile on your face, I promise!

The BEFORE bed!! This was just in February when I finally turned the crib into a toddler bed for Luella! 

The new twin "big girl bed"!! She LOVES it!

First night getting ready for bed in her newly arranged room!

Excited to get all tucked in!

Maybe a little too excited to sleep??

Lights out and cozy!!

Link to YouTube video: https://youtu.be/ZNAOdEy0JBQ

Monday, December 7, 2015

Code Purple

Well, I'm sad to say Luella's seizure-free stretch ended today... We enjoyed just over TEN WEEKS of seizure freedom. 73 DAYS! "Code Purple" was called as Luella had a seizure during gym class. I got the call just before 10:30 this morning. I got there quickly and the seizure had just stopped after one dose of her rescue med. Once again everyone did everything like clockwork. This was Luella's first seizure at school this school year. Luella's para is an absolute angel and we thank her, the school nurse, her gym teacher and all the other staff at the school for doing everything just as they are supposed to. It's really nerve-wracking and a little scary dealing with a seizure especially for the first time but Luella's para did a great job! Luella's classmates were all concerned about Luella. I hope to be able to send them a little message from Luella later today when she is awake and feeling better. She's taking a nice long nap right now....

Luella sleeping off her seizure and meds today...
Thank you for your prayers to get Luella this far!! We hope to reset the clock today and make it OVER 10 weeks next time!

Friday, November 20, 2015

Celebrating 8 weeks... with SNOW!

Luella has made it EIGHT WEEKS (57 days!!) SEIZURE FREE!! This is HUGE!! Let me give you some stats.... We have to go back over THREE and a HALF years before we find a seizure free stretch that was longer. She has only had two stretches that were longer - one was 90 days and the other was 74 days... and those were times when Luella was taking high doses of her meds and was basically not Luella. I don't even know if I would count those times as successes. Seeing her like she is today.... Living life and enjoying every day is such a gift from God! To have 57 days uninterrupted by a seizure is amazing. We thank you all for your continued prayers, helping Luella to get to this milestone!

We got to celebrate today with SNOW!! Our first snow of the year started this morning and by the time school got done it was time to start shoveling! All the kids had fun "helping" me clear the driveway. Luella LOVES the snow. Three and a half years ago when Luella was in the midst of that longer stretch we took her outside to play in the snow and she just stood there. She wasn't playing or doing any of the things she should have been doing. It was a blessing to see her having so much fun outside today. I was getting SO cold so after an hour I bribed her in with some hot chocolate!!

We will continue to pray for more and more days / weeks / months to add to this seizure free run and ultimately we would love to have a cure for Luella. November is Epilepsy Awareness month so keep on helping us fight for that cure!! Wear your purple! And share a picture. :-)