"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

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. :-)


Tuesday, November 3, 2015

Luella says "Wear Purple"!

Luella is showing you how to wear purple!
November is Epilepsy Awareness month!! If you have something purple, please wear it and share a picture with us! I try to put together a little "purple video" at the end of each year showcasing all of our purple supporters - so send me your purple pictures!! We love to see all the purple out there. So many friends were already wearing purple at church on November 1st! Thank you!! Luella loves to see your purple! If you get a chance to let others know why you are wearing purple that would be awesome. Check out the epilepsy statistics below! In addition to those stats.... 1 in 10 people will have a seizure at some point in their lifetime!

And BONUS news...?? Luella is getting very close to SIX weeks seizure free!! Thank you God! Loving every minute of it!

Epilepsy statistics from TheEpilepsyNetwork (TEN).

This is the lawn sign that is in our yard this month!!

Bonus points if you share a picture of yourself with a PURPLE rake!! :-)
Luella was SO excited to find a purple rake to help clean up the leaves!





Monday, October 26, 2015

She is SIX!

Luella has been SO excited for her sixth birthday and it finally happened on Wednesday! Turning six called for several celebrations!
We were able to go back to my family's farm in South Dakota on the 16th. The kids were excited to ride in the combine with grandpa and we had a little birthday celebration there with my family. Her birthday was Wednesday and I think everyone who Luella saw heard all about her turning six! I brought special birthday donuts to her classroom and Luella was so excited to share them. On Wednesday night she opened presents from us and Grandpa and Grandma Johnson, then we celebrated with pizza at Pizza Ranch. The real big fun happened on Saturday when Luella had a party with all of her friends... eleven of them! The theme was Tangled / Rapunzel and Luella had a terrific time!! I was concerned that a seizure might disrupt her day since she is right at the one month mark and is "due" for one. We are so thankful for all the extra prayers to get her through the day. It was so much fun to see her enjoying herself! This was her first "friend" party and her friends treated her royally! I wanted this birthday to be one that she always remembers and I think we made that happen. Now she's already talking about turning seven...

A few party pictures are below. More party pictures can be viewed here: https://goo.gl/photos/98WGduvbm3Jo5Kj68

Our very own Rapunzel!

It was a picture perfect day!

Luella and all her princess friends!

Birthday party fun!

Rapunzel cupcakes in Estelline for an early birthday celebration.

Birthday donuts at school!