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!! 

https://www.youcaring.com/dravetsyndromefoundation-809095

**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!!

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!

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!

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