"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, July 5, 2016

Day 122 was "The Day"

Well, tonight (Tuesday) was the end of our longest seizure-free run ever - Luella made it 122 days. Shortly after falling asleep tonight Luella had a seizure. We had a bunch of family visiting this week for Jim's parents' 50th anniversary celebration. We had several people here and we're visiting in the living room. At 9:22 her alarm began to ring and it kept going. I listened in the monitor and I could her her gasping. I'm running up the stairs praying I'm not hearing what I am hearing. Then I turn her lights on and pull her blankets back to see her eyes wide open, fixed. Gasping. Seizing. Sadness hits me as I know I will have to tell her tomorrow that we stop counting and start over again. I'm thankful that she won't remember this. She won't know that I had to give her two doses of her rescue med to stop the seizure. I wonder if she will feel any different in the morning? If her body will somehow let her know that it did happen? This was hard on me tonight. I didn't want to see this. I wanted to pretend she was healed. That it was done. That Dravet wasn't a part of our lives.... but it is and it will be. This is why we fund raise. This is why we work hard for a cure. Thank you again to everyone who helped make our "a cake 4 a cure" fundraiser a success. We appreciate all the support and more than anything we appreciate your prayers. Luella's prayer at bedtime was "to have a fun day tomorrow without any seizures." I pray that will be the case and we can once again strive to beat a record!

Friday, June 24, 2016

2016 a cake 4 a cure Winner!!

I couldn't wait to see who the winner was this year!! I had a lofty goal of $1,500 this year. Things started out slow but WOW you guys rallied and put me over the top!!

We ended up raising $1,630!!! 

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.

Time for the BIG announcement!!

The winner is..... Vicki Murra!!!! 
I'm so excited to make you a special cake Vicki!!! YAY!!!

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

Here's a video of the drawing...

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


Monday, June 20, 2016

Wear Your Purple on Thursday

Thursday is the 3rd Annual Dravet Syndrome Awareness Day - June 23rd! Please wear something purple and share a picture with me. We LOVE to see all the purple people out there!! Also Thursday will be the LAST day to get a chance to win a cake in my "a cake 4 a cure" fundraiser / raffle. I'm super excited to announce the winner on Friday!! Thank you to everyone who has donated!!

Wear your purple!! 

More details on a cake 4 a cure can be found on this blog post - http://littleluella.blogspot.com/2016/05/third-annual-cake-4-cure-fundraiser.html.

You can donate online herehttps://www.youcaring.com/acake4acure

Luella - 2 years ago on the 1st Dravet Day! June 24, 2014

Friday, June 17, 2016

Luella got her cake... do you want one?

Well, on Monday we celebrated Luella's 100 Days of Seizure Freedom (and we are still counting!!)!!! She of course wanted to celebrate with a cake. I decided to do a watercolor buttercream cake. She LOVED it!! And now your chance to win a fun cake made by me is winding down. Only SEVEN DAYS LEFT to get your donation in for the Dravet Syndrome Foundation and earn one entry for every $5 you donate! Sadly, I'm still far from my goal of $1,500. All the money goes directly to the Dravet Syndrome Foundation in honor of Luella to help find a CURE!! Help us celebrate her with a donation!!

More details on a cake 4 a cure can be found on this blog post - http://littleluella.blogspot.com/2016/05/third-annual-cake-4-cure-fundraiser.html.

You can donate online herehttps://www.youcaring.com/acake4acure

Luella's fun cake to celebrate 100 DAYS!!

Monday, June 13, 2016

100 Days Hooray!!

Luella is 100 DAYS SEIZURE FREE!! Luella surpassed her all time longest seizure free run of 90 days on June 3rd and we were just waiting to see if she could make it to 100 and share the exciting news with all of you!! She is excited to be celebrating today... we are honoring many of her special requests... including chicken strips and macaroni and cheese for supper tonight!! Oh... and maybe a cake too! ;-)

We are amazed and blessed at all she continues to do! Thank you so much for all your continued prayers and support!!

We are celebrating!!

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!!