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!!

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!! 

https://www.youcaring.com/2018acake4acure

**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.

Long Overdue Update

It's been a LONG time since I've posted! And they say, no news is good news, right? Pretty much!! I said last time that we were going to stop counting the seizure-free days - mostly to not disappoint Luella when we are getting close to a record and then a seizure happens. I did do a count tonight because I was curious and here we are 130 days without a seizure!! We haven't set a new record yet - that will be at 175 days, but we are thrilled with how well she is doing seizure-wise.

Ready to skate!!

Because of those seizure-free days she is getting to do so many things that we didn't ever think would be possible. She has been taking ice skating lessons for the past 5 weeks. When I asked her if she wanted to sign up to learn to skate, she started crying and said, "I've been waiting my whole life to take ice skating lessons!" So funny!! She took to the ice with ease! She loves it!! She doesn't always wait for instructions from the teacher... she just wants to GO!!

Luella got an electric scooter a couple months ago! YIKES!! I know!! She LOVES it! She's been wanting to ride it to school forever! I told her when the weather was nicer we would try to do that. Well, last week her bus para happened to not be available for a couple days SO on Friday I rode my bike with her while she zipped along on her scooter. She bought a bike lock with some birthday money so we locked it up good at school and then I rode home. When school was out I rode back to school and we went home together! She is already asking when we get to do it again!

Luella REALLY wants her independence... she wants so much to be able to go off on her own and ride bike or be alone outside. While she is doing so well, I just can't take that risk. Thankfully she has a great sister and two great brothers who help watch her when I can't be right there but I wish I could give her that independence. She gets so tired of ALWAYS having someone around.

School is wrapping up and 2nd grade will be done soon! These last several months of school have been more of a struggle for Luella. Her ADHD has kicked in and focus and attention are a real struggle. We are so fortunate that Luella has such an amazing support staff at school to help her through. She is super smart and really doing a great job of keeping up with her peers academically, she just needs quite a bit of redirection during the day. Along with that have been some behavioral issues... lots of emotions! She can be giggly and happy one second and angry or sad the next.

Luella met with her neuropsychologist back in January and she had lots of good ideas for things we could try. Some worked for awhile and then lost their effectiveness. One thing Luella is doing now is taking scheduled breaks throughout the day to swing in a therapy swing or do some other activity to help her focus better when she gets back to the classroom. So far it seems like those breaks are helping a bit. With the end of the school year being so close we aren't making any other changes right now but we'll be ready when school starts again with some other ideas!

Thank you for keeping up to date with what's going on with our Luella! Stay tuned for the 5th ANNUAL "a cake 4 a cure" fundraiser!! It'll be launching on Saturday!!

GET READY!!!!