"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

Sunday, August 4, 2019

376

We ended up with a stretch of 376 days seizure free and that ended last night. Luella had a seizure about 30 minutes after falling asleep. 

No fever,
Pretty regular sleep,
No clues,
...just Dravet. 

Yes, we are sad to start over BUT super thankful for those 376 days! It was amazing to celebrate ONE YEAR just 11 days ago and we hope to reach one year again the next time!

It was heart dropping to hear the alarm last night... thinking it was probably a false alarm and then walking into her room seeing this.... 


Oxygen levels down to 11 (this should be 100) and her heart rate at 96 (this should be in the 50s during sleep). Thankfully the seizure did stop on its own so no rescue meds needed but she did bite her tongue pretty hard and is dealing with that pain today. Other than the sore tongue and seeing her medication bag in her room this morning, she had no other indication that she had a seizure. I'm glad that she doesn't remember them. 

So... on to other things today and praying for another year of seizure freedom!

Wednesday, July 24, 2019

365 DAYS of Seizure Freedom!!!

Luella reached a HUGE milestone on Tuesday!! 
365 days seizure free! ONE WHOLE YEAR!! 

It's been such an amazing year full of so many activities and opportunities for Luella! We had a party at Pizza Ranch on Tuesday night to celebrate. I created a Facebook event and we were thrilled to have over 60 people there to help Luella celebrate!! She knew we were having a party and she knew a few of the people that I said would probably be there, but she was NOT expecting to see an entire room full of people!! It was such a fun way to celebrate and show her some love! 


365 Days!!
A little blurry, but Luella's reaction to walking
into a room full of people cheering and clapping!

Luella - ONE YEAR SEIZURE FREE!


I put together a display of photos from the past year...
ALLthe fun things Luella was able to enjoy seizure free!
Lots of purple love!!
 




Of course I made cookies!!
Luella concocted her own PURPLE pop by mixing
something red with something blue!!
There were some fun gifts!
FUNNY card!!
 

Then there was little guy.... not alive (not anymore anyway, LOL)!
Just a cute little taxidermied unicorn rat!!
She created quite the uproar!! So funny!



Pictures of some of the MANY activities Luella was able to do over the past year! 
Thanking God for his inexpressible gift!!
Here's a slideshow of the pictures from the past year that were displayed on the board...
https://youtu.be/FdXHL4oLACM



Our family!! Team Luella!

Thank you ALL for all your love and support. 
We appreciate everything!!





Monday, June 24, 2019

The Winner Is....

Hello everyone!

I'm excited to announce that we raised 
$1,220 

for the Dravet Syndrome Foundation in honor of Luella!! 

YAY!! Thank you SO MUCH to all to our VERY GENEROUS donors!! We could NOT do this every year without all your help!! ALL of this money will be sent to the Dravet Syndrome Foundation to help find a CURE!! There is some really amazing research happening with Dravet syndrome and we've been blessed to send them almost $9,000 over the past 6 years thanks to all of your support!!

THE WINNER IS.....

Ingrid Mostad!!! 

I am SO excited to make a fun cake for her this year!  
Congratulations!!  
And thanks again to everyone who 
contributed to this fundraising effort!! 
We have some AMAZING supporters and we are 
SO VERY GRATEFUL to all of you!!
Here's a video of the drawing!!

Link to video of the drawing: https://youtu.be/44rYm-mZpLM
 

Sunday, June 23, 2019

It's Dravet Syndrome Awareness Day

It's JUNE 23...
Dravet Syndrome Awareness Day


...which also means it's the LAST day to get a donation in for "a cake 4 a cure" fundraiser!! I will announce a winner tomorrow!! 


If you haven't donated yet... donate here:

Every $5 earns you one entry into a drawing for a fancy cake or cupcakes OR if you live too far away... some fancy sugar cookies!! Details on how the raffle works here: https://littleluella.blogspot.com/2019/05/sixth-annual-cake-4-cure-fundraiser-2019.html

 TODAY IS 335 DAYS SEIZURE-FREE!!!
Luella is doing amazing!! She finished up two weeks of soccer and is wrapping up a month of tennis lessons. We have vacations, swimming and lots of fun still in the works this summer! We thank you ALL for you continued support and love! We hope you are wearing something purple today and telling those around you WHY! Help us spread some awareness! AND if you still need a Team Luella t-shirt, I have some!! Reach out to me today and I'll see if we have your size!! 

This pretty girl loves to see those shirts around! 
If you are wearing ANYTHING purple - please share a picture with us!!


Thursday, June 13, 2019

Fundraiser Update


My fundraiser is off to a fantastic start - thank you to a handful of super generous people!! Thank you so much!! In fact, I've already hit the goal of $1,000!!! We have just over a week left and I'd LOVE to be able to raise some more money for the Dravet Syndrome Foundation in honor of Luella. Please consider donating to the fundraiser and getting your name into the drawing for a CAKE from me (or cookies....)! Please see the original blog post here for all the details....

OR jump straight to GoFundMe to donate:

You can personally give me cash or a check (to DSF) also!! 

Since Dravet Syndrome Awareness Day is approaching (June 23) - you all need to wear some purple... right?!?!? If you are interested in one of the newer shirts I designed last year, I do have a few on hand in various sizes. Just let me know what size you are looking for and I'll see if I have it. 

Shirts are $15 for adult sizes, $2 more for sizes XXL or larger.
Children's shirts are $12.  
All profits from these shirts will go to the 
Dravet Syndrome Foundation!


Oh, and in case you are wondering.....
Luella is STILL on a SEIZURE-FREE RECORD.... 
325 days TODAY!! 
Even with a busy schedule of 
Tennis, Soccer and VBS this week, she is doing amazing!! 


Wednesday, May 29, 2019

Sixth Annual "a cake 4 a cure" Fundraiser - 2019



This year is my SIXTH ANNUAL “a cake 4 a cure” fundraiser to raise money for the Dravet Syndrome Foundation to help find a cure for this rare form of epilepsy.

Please visit the fundraising website (GoFundMe) to make a donation.
https://www.gofundme.com/dravet-syndrome-awareness-for-luella
More details on the raffle can be found on this post below! PLEASE NOTE: There won't be anything about the raffle on the donation site at GoFundMe - that is strictly a place to donate. I will keep track of what you donated to make sure you have the correct number of entries in 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! Over the past 5 years we've sent over $7,500 to the Dravet Syndrome Foundation!! 
THANK YOU!!!


Last year's winner was Rebecca Arndt. 
She is a huge Harry Potter fan and wanted Harry Potter themed cupcakes for her birthday party! 
This is what I made to help her celebrate! 


So, how does this fundraising raffle work?
Each entry into the 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... if someone from a distance donates and wins, I WILL bake 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 arrange to pick up the cake in Luverne.

Please visit GoFundMe to make a donation 
or cash or checks (made out to DSF) 
can be given to Heather or Jim!! 

**Now for the fine print... 

Sugar cookie example of what I could SHIP!!
1. I will only deliver to Luverne MN, Sioux Falls SD or Estelline SD areas or areas in between OR you may arrange to 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 UNLESS YOU pick up or you may choose the 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.  No wedding 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 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/cookie hobby, check out Embellished Luv on facebook! You can see some of the fun cakes and cookies I've made in the past.  PLEASE NOTE: I'm currently NOT taking orders. I'm busy with other things these days, BUT the winner of the raffle will definitely get a cake!! (or cookies!)

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!
Share pictures of you wearing purple!


Luella celebrated 300 DAYS SEIZURE FREE on May 19th!!!





300 days PLUS!!!

I've been slow to post this exciting news, but on May 19th Luella celebrated 300 days seizure free!!! That means we are currently at 310 days!! WHOOOHOOO!! Such an amazing thing and an answer to prayers!

In preparation for this exciting milestone I decided to let Luella color her entire head!! We did it on May 16th so she would have a couple days to show it off at school before summer break AND it was vividly pink / purple for her 300 day mark on Sunday, May 19th! I did a little pink to purple ombre effect! This is just something I do at home. I like the dye because it's not permanent so it will gradually wash out. (It's already MUCH lighter!) This is the dye I use if anyone is interested.


 So patient while getting some AWESOME hair!!


 


 TOO COOL FOR SCHOOL!!

Thank you all for your continued support on Luella's journey. She loves to know so many people are cheering her on and praying for her! Our next big milestone?? ONE YEAR!!!