Record Setting Days Continue into Epilepsy Awareness Month

 Luella is on roll! We are past 450 days seizure-free and STILL COUNTING! Thanking God for all those days EVERY day! And now we into November and Epilepsy Awareness Month. We hope you all will do something to help us spread awareness for epilepsy. Wear some purple, wear your awareness shirts or bracelets or share a post on Facebook with some epilepsy facts - watch my Facebook feed for things you can share! 

Luella turned 11 in October and because of covid we just had a very small family party at home with Grandpa and Grandma J. Luella usually has a pretty fun friend party so she was bummed to not get to celebrate with her friends. She had a few friends do some special extras to make the day fun and we are SO grateful to them for helping her celebrate!

Birthday ZOOMING!

Birthday Scavenger Hunt!!

Birthday CAKE!! It's good to be 11!!

Halloween was a fun and a way to get out of the house and see some friends while walking the neighborhood! Her friends may not have recognized HER though!! The kids have gotten into watching "Invader Zim" cartoons and we DIYed some fun costumes this year!! Luella is the one in the middle, "Gir."

 Remember to wear purple in November! Share a picture with us! 

I'll leave you with this little clip of "Gir" doing a little dance!
Watch on Youtube: https://youtu.be/q5_rsMVeoY4

 

New RECORD

NEW RECORD!!! 

So fun to celebrate one year and twelve days seizure-free! 377 days of enjoying life without ONE seizure to stand in her way! Praying for MANY more days. We celebrated with homemade pizza tonight and a yummy cookie cake loaded with M&Ms! As I put Luella to bed tonight she said.. "So every day past today is basically a new record, can we celebrate everyday?" Nice try Luella... yes, we WILL celebrate everyday... maybe not with a cookie cake though! 💜

ONE YEAR SEIZURE FREE!

Luella made it to ONE YEAR SEIZURE FREE again!! Hurray! Last year the all-time record was ONE year and ELEVEN days.... and we are on our way! She has been doing amazing so I believe we will keep trucking past that record! If we get to August 14th we'll have a new record!

365 DAYS SEIZURE FREE!!
(from Pizza Ranch celebration last year)

Luella was remembering celebrating last year at Pizza Ranch with so many friends and family! That was amazing! She absolutely loved that! Sadly, the current conditions will keep us from celebrating with others... but if we get there, we'll definitely do something special at home!!

At last year's celebration!!

Luella with one of her 4-H craft projects for the "virtual" County Fair this year!
Made from rocks and sticks in our landscaping.

This picture was taken
just a couple days
before her 1st seizure

Every year as we get into August, I'm reminded of Luella's first ever seizure... on August 8, 2010 - TEN YEARS ago!!

So crazy how time flies. I look back at those ten years as two time periods... the first five years being the real struggle. The really hard time. Lots of seizures. Lots of ER runs and hospital stays. Many helicopter rides. Medications, changes in diet. Disrupted plans, over and over. REALLY hard times. And then she turned 5 and we tried a new medication and it worked wonders! She was coming to that age when many Dravet kids see a natural decline in seizures. We could do more things. Relax... a little. And she took off. Doing so much! Accomplishing more than I thought she would! We are SO blessed to have her doing so well.

As she continues to grow... in ways I don't appreciate so much - she is now taller than me, I'm reminded to keep things in perspective and not let down my guard. Growing up can be a challenge for these kids. I continue to pray that God will protect Luella and we thank you all for your continued prayers too!

Where did LITTLE Luella go?!?!?!

And the winner is.... 2020 a cake 4 a cure Winner Announcement

Hello everyone!

I'm excited to announce that we raised 

$1,530 

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 OVER $10,000 over the past 7 years thanks to all of your support!!

THE WINNER IS.....
(drumroll)

David Bonner!!! 

David is Jim's boss and lives out on the east coast... so he'll get some special cookies for sure!! He has been a loyal supporter for several years and I'm SO excited to see him win!  

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/6wfx1LRGwro

Oh, and if you want one of those adorable little gnomes that Luella is holding in the picture above... head over to my friends' facebook page (The Seven Gnomes) to get yours! She is donating 50% of the sale of these Purple Power Dravet gnomes to DSF in honor of Luella! How cool is that?!?!

2020 Fundraiser Update

We hit our fundraising goal awhile ago!!! Thank you to our friends and family for generously supporting this effort!! Some of you give EVERY year!! THANK YOU!!  We have just over a DAY left and we'd love to add some extra funds 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....

https://littleluella.blogspot.com/2020/05/seventh-annual-cake-4-cure-fundraiser.html

OR jump straight to GoFundMe to donate:

https://www.gofundme.com/f/uvy2xf-dravet-syndrome-awareness-for-luella

https://gf.me/u/x4hgcv https://gf.me/u/x4hgcv

https://gf.me/u/x4hgcv

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

Watch for a post on Wednesday, June 24th - I'll be announcing the WINNER!!

Don't forget to wear some PURPLE tomorrow (June 23rd) in honor of Luella and Dravet Syndrome Awareness Day!!  Share your pictures with me!! 

ALSO.... Luella is currently 324 DAYS SEIZURE FREE!!!!

Thank you for your continued prayers. 

Seventh Annual "a cake 4 a cure" Fundraiser - 2020

This year is my SEVENTH 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!! Hard to believe we've done this for 7 years now! We appreciate ALL of you who continue to support Luella and finding a cure!

Please visit the fundraising website (GoFundMe) to make a donation.
https://www.gofundme.com/f/uvy2xf-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 6 years we've sent over $8,500 to the 

Dravet Syndrome Foundation!! 

THANK YOU!!!

Last year's winner was Ingrid!

She is a huge Minnesota Gopher Volleyball fan! 

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!! 

https://www.gofundme.com/f/uvy2xf-dravet-syndrome-awareness-for-luella

**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. No wedding cakes. Level of detail is to my discretion.

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 ONE YEAR of seizure freedom on July 23rd last year!

Luella is currently 294 days seizure free. 
Last year she got to 376. 
We hope to get to a year again! 
THANK YOU EVERYONE!!

Hello 2020! (Vision?)

Wow! I can't believe I haven't posted since August! No news is good news, right? RIGHT!

Luella is simply doing AMAZING! She hasn't had another seizure since the one in August... That means ONE SEIZURE in the whole entire year! Such a blessing!

And now it's 2020.... and 2020 takes on a new meaning for Luella this year as she just got GLASSES!! Of course I think she looks adorable. She picked some fun dark plum frames that fade to a lighter color on the bottom. We thought it would be fun to make her hair match her glasses, so on Sunday night I colored her hair! We love it!

Our PURPLE girl!

Luella started the 4th Grade in September and she turned 10 in October!! I can't believe she only has next year left in the elementary. I'm not ready for her to be so grown up! She's only 2 inches shorter than me... of course I'm only 5 feet tall, so she will be passing me up this year I'm pretty sure.

This school year is going so well for her! She no longer has a one-on-one para during most of the day at school. We are blessed with a dedicated bus para that rides the bus to and from school with her and she has a couple paras that are around during the school day for gym, etc... but for the most part she's just with her regular teachers and it's been going well.

Starting 4th GRADE!!

Luella's 10th Birthday!

We've been fortunate that despite having some sick siblings at home off and on this winter Luella has managed to stay pretty healthy! We pray that continues into the new year and we can avoid seizures as well! It's so amazing to see her having more of a "typical" life! We never know what the future may hold but we are enjoying every seizure-free day we get!

Thank you all for the continued prayers for Luella!