"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

Saturday, June 24, 2017

2017 a cake 4 a cure Winner Announcement!!

I've been SO anxious to see who I get to make a special cake (or cookies) for this year!! I set my goal at $1,500 this year and you all helped in exceeding that once again!!

We ended up raising $1,596!!! 

All of that money will be sent to the Dravet Syndrome Foundation to help find a CURE!! Thank you so much to everyone that contributed!! You are all amazing!! To see what DSF has been working on you can see some of the current research here - http://www.dravetfoundation.org/research/dsf-funded-research. There is some really amazing research happening and we've been blessed to send them almost $6,000 in the past 4 years thanks to your support!!

Time for the BIG announcement!!

 Jolene Krause
I'm so excited to make you a special cake or cookies!!! YAY!!!

Once again I took a video of me doing the drawing so you'd know it was done fair and square!! :-) So many friends and family are included in the drawing and I don't want anyone to think I was playing favorites!! :-) 

Here's a video of the drawing... (please excuse my raspy morning voice!)


Thanks again everyone for all your support!! We are SO BLESSED to have such an amazing network of friends and family to support Luella!!


Friday, June 23, 2017

Dravet Syndrome Awareness Day! 120 DAYS SEIZURE FREE

We hope you are wearing PURPLE today for the 4th annual International Dravet Syndrome Awareness Day!! If you are wearing something purple... send us a picture!!

Today Luella is 120 Days SEIZURE FREE!! 
We'd love it if you'd celebrate Luella today by donating to my "a cake 4 a cure" raffle / fundraiser! More details about the fundraiser can be found here: https://littleluella.blogspot.com/2017/05/fourth-annual-cake-4-cure-fundraiser.html and donations can be given directly to me or given online here: https://www.youcaring.com/dravetsyndromefoundation-809095
Donations will only be accepted until midnight tonight (June 23rd) and a winner will be announced tomorrow - Saturday, June 24th!! I'm SOO close to our goal... please help us out!

Sunday, June 4, 2017

We made it a hundred days!!!

100 days of seizure freedom feels pretty awesome!! 101 days is even better! Yesterday was officially 100 days seizure free. I wanted to get a post written but I had a super busy day. So... that brings us to 101 days today. Luella's last seizure-free stretch was 174 days so we are hoping to keep on chugging through the summer and getting to beat that record!

The past 100 days have been full of lots of fun things... most importantly, Luella wrapped up her first grade year! In the fall we'll have a 2nd grader!! We were pleased to END the school year with 2 working legs!! ;-)

Luella is looking forward to a summer of riding bike/scooter, t-ball, gymnastics and swimming lessons!! We are amazed at all she has accomplished! A few years ago we would have been surprised to know this is where she would be now! So much to be thankful for!!

Dravet syndrome is so random and uncertain and even though Luella is doing well now we know that things can (and probably will) change at some point. That's why we continue to do all we can to raise funds for the Dravet Syndrome Foundation. PLEASE don't forget about our a cake 4 a cure fundraiser! We only have about THREE WEEKS left and we are not even close to our goal. We'd like to send $1,500 to DSF this year so please pass the word along. Also please note that ANYONE can win!! If I can't get you a cake I will SHIP COOKIES!!

Check out the details for the fundraiser on this blog post here: https://littleluella.blogspot.com/2017/05/fourth-annual-cake-4-cure-fundraiser.html

https://www.youcaring.com/dravetsyndromefoundation-809095 (or get me cash or a check).

Tuesday, May 23, 2017

FOURTH ANNUAL a cake 4 a cure Fundraiser

The fourth annual Dravet Syndrome Awareness Day is coming up soon - on June 23rd... in just ONE MONTH! That means my fourth 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.

Donate here!! https://www.youcaring.com/dravetsyndromefoundation-809095 
More details on the raffle can be found on this post below! 

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 3 years we've sent over $4,000 to the Dravet Syndrome Foundation!!

Last year's winner was Vicki Murra. Her cake will be in the works this year... I was busy during the time she wanted a cake last year so she is on my calendar!! I think it'll be something fun for her boys' birthday!! :-)

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. However... this year I decided if someone from a distance donates and wins, I WILL do 2 DOZEN cookies (decorated sugar cookies or chocolate chip cookies) and ship them!! I WILL deliver a cake to the winner in Luverne, Sioux Falls or Estelline areas OR you may pick up the cake in Luverne.

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 eligible for a cake... only cookies that I can ship. 

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. 

5. The donation website will close down at midnight on June 23rd and a winner will be announced on Luella's blog and the fundraising site on June 24th!! 

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 find out more about my little cake hobby, check out Embellished Sugar ! You can see some fun cakes and cookies I've made in the past 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!
And as always... please share those purple pictures with us!!

Thursday, February 23, 2017

Seizure strikes again...

We've been having such a fun time counting Luella's seizure free days... today she made it to 174 days and that's where we stop this time. Shortly after reading "Silverlicious", saying bedtime prayers with Luella asking God once again to take her "seizures away forever", singing bedtime songs and hugs and kisses... she had a seizure.

Luella has had a cold. I thought she was getting a little better but was hit with some chest congestion and now a cough today. She didn't feel hot at bedtime but did have a fever of 101 after her seizure. Thankfully the seizure stopped all on its own tonight without any meds - not common for a bedtime seizure so we are thankful for that. She immediately went into her shivering - which she does after almost every seizure. I asked her if she was cold and she replied "Yeah" - another thing she doesn't often do after a seizure. I gave her some ibuprofen and hopefully she doesn't spike another fever during the night. I snuggled a bit then left her to sleep. Then I shed my tears.... I will have to tell her tomorrow that she had a seizure.

But... we are grateful for 174 days. That was the longest EVER! And we'll look forward to the next big long run and hopefully that starts tomorrow!

Thursday, February 2, 2017

Celebrating 150

On Monday, January 30th Luella celebrated 
150 days of seizure freedom!!

She has blown past her previous record of 122 days set last summer! We are SOO excited for her. Of course we had to celebrate a little bit... She requested pizza so when she got home from school she helped me make some yummy pizza. (She LOVES to help in the kitchen!)

She also requested a cookie "cake"... basically a giant 14" chocolate chip and M&M cookie that I made and decorated for her! She was thrilled! SUGAR HIGH!??! (Thankfully she was smart and scraped most of the frosting off before eating.)

It's amazing to see her keep going everyday. She prays every night for God to "keep the seizures away forever".... I pray that too. I know that when that next seizure comes, she will just pick up and start the count again without missing a beat. She is so strong.

I have to say last Saturday when Jim suggested we go tubing as a family, I had a teeny tiny part of me inside that wanted to stay home and keep her safe and not risk a seizure. I knew I couldn't do that. She is enjoying life and all it has to offer and we want her to do all that she can! We went and we all had a terrific time! When the rest of us were tiring out, SHE was the one wanting to stay even longer!

Brave Luella ready to hit the hill!

Luella having a great time tubing!

Love family times like these!
We feel so grateful for these last 153 days now, and look forward to each seizure-free day Luella is granted going forward! We pray for God's will and thank you all for your continued love and support, and most importantly, your prayers!

Friday, December 16, 2016

Luella's Flight to the North Pole

Luella got to take part in a very special experience on Wednesday. Make-A-Wish Minnesota sent Luella an invitation to take part in Sun Country Airlines "Flight to the North Pole". She's been invited every year since her Wish trip but we just haven't been able to make it work. This year I wanted to make sure to make it and fortunately the weather cooperated and Luella and I made the drive up to Minneapolis on Wednesday. It was a LONG day - driving up to the cities, taking a little time to shop at Ikea (that part was for me), then on to park and get on the bus to head to the airport!

We got off the bus and headed to ticketing to get our tickets to the "North Pole". Luella knows we didn't really go to the North Pole, but it was fun no matter what! Everywhere we went we were greeted by "elves" and so much festivity! We got our tickets and headed to the gate. Up at the gate area there were of course more elves but also lots of team mascots and fun! Soon it was time to board. The plane was all decked out and the flight attendants were dressed as elves too. The kids shut their window shades and the plane "took off"! The pilot revved the engines and taxied around while everyone was served supper on the plane. When we "arrived" we had to wait a bit for Santa to signal that he was ready for the kids. Then it was time to get off the plane and visit Santa!

We got off the plane a few gates down from where we boarded. They had transformed the area into a fun place to meet with Santa. Luella was so excited to meet Santa and tell him what she wanted for Christmas. Santa took a few minutes to meet with each of the almost 70 kids there. When it was Luella's turn she made sure to tell Santa she wanted a scooter for Christmas. Then Santa gave her a little early gift to take home - a little stuffed Cambri toy and a Sun Country airport playset! Luella also got a special Rudolph balloon hat! Luella wasn't sure if this was going to be the "real" Santa but after he greeted her with a "Ho, Ho, Ho" she told me she knew it was the real Santa!

There wasn't a "return" trip from the North Pole so I was glad Luella understood it was a pretend trip. I heard a few kids say "but don't we need to fly home?" ;-) Soon it was time to get back on the bus to head back to the parking garage! We stopped for gas and Luella changed into PJs for the ride home. It was about 9:15 when we got on the road! Thankfully Luella was out within about 30 minutes... despite all the cookies and candy they filled her up with! I was thankful for good driving conditions and a list of podcasts to keep me awake for the drive home. Luella slept the entire way home and we pulled in the driveway at 12:30!

It was such a fun and magical night for Luella. I'm so glad we had this opportunity. Make-A-Wish Minnesota and Sun Country Airlines did an amazing job making sure all the kids had a terrific time!

You'll have to view the video slideshow to see all the fun!! https://youtu.be/pqLAZZ3es8g