"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 30, 2018

Starting over...

Well, we got to that brand new record on Sunday... it was 175 days. We made it to last night... 180 days and then Luella had a seizure just a few minutes after falling asleep last night.

We've had a few short-lived colds here this week... Ashlyn, then Ryker, and yesterday Luella woke up feeling stuffy. By late afternoon she was tired and just not feeling well. I took her temp... 101.4. I gave her ibuprofen right away and when getting ready for bed it was down to 100.0. She had acetaminophen at bedtime and we hoped that would get her through the night. Luella was concerned at bedtime that she might have a seizure. I told her she might but she would be okay. She prayed that God would keep the seizure away but our desires don't always match up with God's plans. Within about 10 minutes of falling asleep her pulse-ox alarmed and I could hear the labored breathing starting over her video monitor.  Jim was already upstairs and I rushed up. The seizure wasn't stopping and her oxygen levels were very low. I had to give her a dose of her rescue medication... something I haven't had to do since September 2, 2016!!! The seizure stopped and she slept through the night.

This morning she slept until almost 9:00. She didn't have a fever and has been feeling pretty good... runny nose and sneezing this morning but hopefully the fevers are gone and we won't be dealing with anymore seizures.

180 days without a seizure is so amazing! Luella has been able to do SO many things! ...things that she used to NOT be able to do. Just a few years ago we could not go to a pool without Luella having a seizure. Swimming was just something that she couldn't do. Now she is doing this...


She just finished up 2 weeks of swimming lessons and was SO excited to pass Level 2!! She is doing so amazing!

She is also doing t-ball this summer and is enjoying that as well! She is learning a lot and improving everyday! Only one more day of t-ball left! Even though she got assigned to the "green" team, she accessorizes her look with purple of course!!



On Thursday night the girls and I stopped at a little clothing boutique downtown. I spotted this necklace and told Luella we had to get that... as a reminder that we need to take "one day at a time". She loves wearing it and it reminds us to enjoy and be grateful for every day we get ... t-ball days, swimming days, lazy days at home... and even a day that ends with a seizure. 



Thanks for all your love and support. 

Sunday, June 24, 2018

New seizure-free record!


Luella made it to today without a seizure!! That brings her to a NEW SEIZURE-FREE RECORD of 175 DAYS!!! We are so grateful for all the thoughts and prayers to get Luella to this point. We've been through challenging days on this journey and to get here is an answer to prayers! Luella prays every night that God will take away her epilepsy and we hope that someday there will be a cure... until then we are going to enjoy all the seizure-free days we can get!! Today we celebrated with a family swim and homemade pizza at Luella's request! God is good!!

2018 a cake 4 a cure WINNER announcement!

Hello everyone!

I'm super excited to announce that we raised 
$1,640 
through our "a cake 4 a cure" fundraiser this year!! 

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 $7,500 over these past 5 years thanks to all of your support!!


REBECCA ARNDT!!! 
 Rebecca is a friend of Luella's and we are 
SO excited to make a fun cake for her this year!  
Congratulations!!  And thanks again to everyone who contributed to this fundraising effort!! 
Here's a video of the drawing!!

We are doing another order t-shirt order if you decide you want one. Let me know before June 29th.

Wearing our new "Team Luella" t-shirts!!


Sunday, June 17, 2018

How about helping us celebrate?!?!

Hey everyone! So.... after Luella's last seizure - on New Year's Eve, I decided to stop counting days and making Luella so aware of "records" etc... She was sad last time that we missed setting a new record by a couple weeks. We haven't been counting days and I haven't told her what is coming up VERY soon!! If we continue on this seizure-free path... on Sunday, June 24th... the day AFTER Dravet Syndrome Awareness Day, Luella will have a NEW SEIZURE-FREE record of 175 days!! I'm so hopeful that she will get there this time and every day after that will be a new record! It's amazing how well she is doing and we are SO GRATEFUL for all your love and support! Luella doesn't know about this record and won't know unless she gets there on Sunday!!!

We are SO CLOSE to a new record!!!!


In celebration of Luella and Dravet Syndrome Awareness Day we'd love for you to consider a donation to the Dravet Syndrome Foundation as part of my "a cake 4 a cure" fundraiser! We have a goal of $1500 and we are just a little over half way there with only a few days left (June 23). You don't have to be local to donate... I will pick a winner from all donations and if you happen to be far away I will make you specialty sugar cookies and ship them!

Even though Luella is doing SO well right now... she still has Dravet and she will have Dravet her whole life. She needs a CURE. As she gets a little older we anticipate more seizures as her body changes and hormones take over. That time could be especially bad for her and all the fundraising we do now can help!

Remember to wear PURPLE on Saturday, June 23rd - Dravet Syndrome Awareness Day!! And share your pictures!! The new "Team Luella" shirts are DONE and I'll be picking them up on Monday... so if you ordered, get in touch with me and we'll get you your shirts before the weekend!! I hope to ship the far away ones right away on Tuesday so you should have those too!! Let's make the world PURPLE on Saturday!!

Get those donations in soon!! I'll take checks or cash any time too. (Checks can be made directly to DSF!)
Thanks everyone!! 
Donate HERE!



In honor of the amazing dad Luella has on this Father's Day! Jim has helped me on this journey with Luella SO much... I could NOT have done this alone! 
 

Saturday, June 9, 2018

ONLY 2 weeks left!

Only 2 weeks left for WHAT?!? Well... you only have 2 weeks left to get in on my 5 ANNUAL "a cake 4 a cure" fundraiser!! AND 2 weeks from today on June 23rd is the annual Dravet Syndrome Awareness Day! AND some exciting news.... Luella has continued to remain seizure-free since her last seizure on New Year's Eve... which means if we continue down this path JUNE 24th will mark a NEW RECORD of seizure-freedom for her!

 

PLEASE help us celebrate Dravet Syndrome Awareness Day and Luella's progress by donating to our fundraiser and just maybe you will win a CAKE or COOKIES custom made by me!!
I will not ship a cake but I WILL ship cookies so don't hesitate to donate if you live far away! We appreciate all your continued support to help find a cure for Dravet syndrome! Details on the fundraiser can be found in this blog post - http://littleluella.blogspot.com/2018/05/fifth-annual-cake-4-cure-fundraiser-2018.html

Donation site - https://www.youcaring.com/dravetsyndromefoundation-1186879

We'd LOVE to make our goal of $1500 for 
the Dravet Syndrome Foundation!!

Remember to wear purple this month to help raise awareness!! And especially on June 23rd - Dravet Syndrome Awareness Day!!  

 

If your ordered one of our new "Team Luella" t-shirts, they will be ready soon! 
I will keep you posted on the status! 

 

Monday, May 14, 2018

NEW Awareness T-shirts for Sale

Since it's been 4 years since we did the Little Luella t-shirts to help bring awareness to Dravet syndrome I decided it was time to do an updated shirt! You all were SO amazing helping us out and buying SO many shirts last time! We hope you'll want this new updated version next!!

Here's the NEW DESIGN!!! 
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!  
 
The shirts will be available in TWO colors -  "heather purple" or "dark heather".
They have a front design - on the left, and back design - on the right.
  Orders must be placed by June 1st!

These are Gildan Soft Style T-shirts. The are sized slightly smaller than the other shirts we had. 
They are a nice soft t-shirt!!  

YOUTH Sizes available are YXS - XL. See the sizing chart below. (Click to enlarge.)
 

Adult sizes are XS - 4XL See the sizing chart below. (Click to enlarge.)


Let me know what you want to order. Orders must be to my by June 1. Shirts should be ready to pick up mid-June... just in time for Dravet Syndrome Awareness Day on June 23!!
If you need me to ship the shirt(s) to you, I do ask that you cover the shipping cost - probably $3-4. Thanks!!
Checks or cash can be given (and made out) to me.
Please let me know if you have any questions!!

Saturday, May 12, 2018

Fifth Annual "a cake 4 a cure" Fundraiser - 2018


The FIFTH annual Dravet Syndrome Awareness Day is coming up soon!
June 23rd... in just 6 weeks!

That means my FIFTH 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/2018acake4acure
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 4 years we've sent over $5,500 to the Dravet Syndrome Foundation!!




Last year's winner was Jolene Krause. Her cake will be in the works later this year... she has a special occasion coming up in November so she is on my calendar!! The winner from 2016 got her cake last fall.. it was such a FUN baseball theme for her boys' birthdays!

The 2016 winner's 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. However... 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 arrange to pick up the cake in Luverne.

Please visit the fundraiser website to make a donation 
or cash or checks can be given to Heather or Jim!! 

**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 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 hobby, check out Embellished Sugar ! You can see some fun cakes and cookies I've made in the past http://www.embellishedsugar.com/  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!

We will hopefully be doing 
NEW 
LUELLA EPILEPSY AWARENESS
 shirts this year!! 
Be on the lookout for more information in the next week or so.