"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, May 23, 2016

THIRD ANNUAL a cake 4 a cure Fundraiser

Dravet Syndrome Awareness DayThe third annual Dravet Syndrome Awareness Day is coming up in just ONE month - on June 23rd! That means my third annual "a cake 4 a cure" raffle / fundraiser is kicking off too!! Please visit the fundraising website to make a donation. I will keep track of all donations and entries into the drawing.
The donation site will close on June 23rd and a winner will be announced on June 24th! 

ALL money will be donated to the Dravet Syndrome Foundation in honor of Luella and to help find a cure! In the past 2 years we've sent over $2,500 to the Dravet Syndrome Foundation!!

Last year's winner was Angie Fick. She choose to have a cake made to help her parents celebrate their 50th wedding anniversary. I really enjoyed making this special cake!

So, how does this raffle work? Each entry into the cake drawing is $5. If you donate $50 - you will get 10 entries into the drawing. This is basically a LOCAL raffle since I will not ship a cake. I WILL deliver to the Luverne, Sioux Falls or Estelline areas OR you may pick up the cake in Luverne. If you live outside these areas and do not plan to pick up the cake, you may still donate but you will not be eligible to win the cake.

Please visit the fundraiser website to make a donation!! 

**Now for the fine print... 

1. I will only deliver to Luverne MN, Sioux Falls SD or Estelline SD areas or areas in between OR you may pick up the cake in Luverne. NOTE – If you live outside these areas, you may still donate but you will NOT be included in the raffle. If you are outside these areas and plan to pick up the cake yourself, please let me know so I can include you in the drawing.

2. The cake will be a 10" round cake (or equivalent). This would be a great sized cake for a birthday with 20-25 guests! 

3. The cake will not exceed 12 hours to make – this eliminates some of my more extravagant cakes. 

4. Cake must be “ordered” at least 4 weeks in advance. I will try to be available, although please understand that we get busy at times and may have travel planned. I would ask that you be flexible and maybe have another occasion in mind. 

If you'd like to follow Luella's Blog please visit: http://littleluella.blogspot.com/

If you'd like to learn more about Dravet Syndrome or the Dravet Syndrome Foundation, please visit: http://www.dravetfoundation.org/

To read more about Dravet Syndrome Awareness Day please visit: 

To find out more about my little cake biz, check out Embellished Sugar ! http://www.embellishedsugar.com/ 

Thank you!!! I can't wait to announce this year's winner!!

Please share!!

Luella on the first Dravet Syndrome Awareness Day in 2014. June 23rd is all about her!

Get your purple ready for June 23rd!

Friday, May 20, 2016

Blessings! (warning... you may shed a tear!)

We are just amazed at what God is doing in Luella's life! We are SO blessed. Can you believe Luella is currently 76 days seizure-free?? This is her 2nd longest run EVER!! We are closing in on 11 weeks without a seizure!! How are we doing this...? Faith and prayer! God is giving Luella the opportunity to do SO many things. I have to admit we've been nervous about letting her do some of the things she's gotten to do these last 10 weeks... things like going to swimming birthday parties, another party at a big trampoline park and jumping for ONE HOUR, getting her ears pierced - YES! Her ears pierced!! She didn't even cry!! Playing at a children's museum for several hours. She's upgraded her very small 12" bicycle with a bigger 18" bike and is still doing great without training wheels! She completed the Cardinal Dash run at school and had a full afternoon of Kindergarten track and field. She went on a class field trip to city park where she got to play for 3 hours!! She also managed to stay healthy during 2 bouts of strep throat at our house!! Each one of these events may have caused me to hold my breath for a second but I exhale and pray. Pray for protection. Pray for no seizures. God is good and has answered our prayers in the most amazing way.

So far this year - since January 1st - Luella has only had THREE seizures!! Thank you all for continuing to keep Luella in your prayers! I couldn't even get through writing this post without crying some tears of joy... especially after looking at all the pictures of the fun Luella has enjoyed these last 10 weeks. These are all pure blessings!! I'll leave you with a few pictures of some of the precious moments Luella has had these last 10 weeks.... Enjoy them as I have and see a little girl that getting to live the most amazing life!

She got her ears pierced!

Butterfly earrings!

Jumping at SkyZone with a friend!

LOTS of jumping!

Flying a KITE!

Children's Museum Fun

Cashier Luella

In the clouds with Burke.

Ball toss at track and field day.

She can hurdle!!

And long jump!

Holding a baby chick.

New bike!!

One happy, and blessed, little girl!! 

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