"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

Thursday, August 5, 2021

Celebrating 2 Years!

Luella had a fabulous time celebrating 2 years of seizure freedom on Tuesday! We had food and ice cream at JJs in Luverne while about 40 people stopped by to say hello! Our one hour celebration turned into three hours! It was so fun to see everyone - some that we haven't seen in quite awhile too! There were several people that wished they could have been there and sent messages, flowers and gifts throughout the day. Thank you everyone for helping to make this a special day for Luella. We hope that we can keep adding seizure free days and maybe celebrate again in a year!

 Celebration Video: https://youtu.be/xsBH3ffcKQs

Luella is excited to be getting ready to enter MIDDLE SCHOOL!! She will be heading back to in-person school in September after a year of online school. She is very anxious and ready to see her friends again! We will be taking a few extra precautions initially until she can be fully vaccinated. I'm not excited for her to be turning 12 in October... I'm not sure how my baby grew up so fast, but I am glad she will be able to be more protected from COVID. We are praying that the COVID cases will go down and all of our kids can enjoy a more normal school year.

I've been asked if I feel like I can let down my guard a bit now that Luella has gone 2 years without a seizure? And yes, to a point I can. We don't watch over her 24/7. She has more freedom to be outside with friends or alone in her room reading or drawing. If we are somewhere right in town I don't always take her rescue meds with me - I know I can be home in just a few minutes. When school starts she will not have a para following her around and no special bus aide to be with her on the bus - just a sibling and a bus driver with us on speed dial. The last three seizures she's had going back to almost four years ago have all been after going to bed at night. That first 30 minutes after falling asleep, especially if she's been sick or not feeling well are the times when I'm more on guard. That being said, Luella had a pretty bad summer-time cold a few weeks ago and she even ran some some fevers up to 101 and she did NOT have a seizure! We are just so grateful for how well she is doing!

She could be seizure-free for 10 years and I'd probably still not completely feel at ease, but we are happy with where she is now and I'm glad she can live a more typical life without seizures disrupting her. Thank you for all the prayers!


Tuesday, July 27, 2021

Closing in on TWO YEARS Seizure-FREE

August 3, 2019 was the last day Luella had a seizure. It was 10:09 p.m. She had been asleep for less than 30 minutes. She wasn't sick and didn't have a fever. The seizure lasted for about 10 minutes. Why did she have that seizure? We have no idea. Why hasn't she had one since? Answered prayers for sure! So many people have prayed for Luella and continue to pray for her and we are so very grateful! 

When Luella made it to her first year of seizure-freedom on July 23, 2019 we had a fun little Pizza Ranch party and celebrated with lots of friends and family! Eleven days after that party she had a seizure which reset the clock and now... here we are and just about TWO YEARS seizure-free

On August 3 we will celebrate! Until Luella can be fully vaccinated we won't have any indoor celebrations with others but we decided we are going to party at JJs!! 

We will be set up at a picnic table at JJs Drive-In in Luverne from 5:30 - 6:30 pm on Tuesday, August 3!  


If anyone would like to join us or if you'd like to drive through and honk or say hello to Luella, we'd love that!! Stop and have supper or grab an ice cream treat to cool off! Wear something purple if you have it!! Look for the purple balloons! 

Bring a lawn chair if you want to sit and visit awhile! Please NO gifts! Luella will just be excited to see you!!

RSVP on our Facebook event - https://fb.me/e/133Tx2W92

 

Thursday, June 24, 2021

I'm excited to announce that YOU helped us raise
$1,615
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 $11,500 over the past 8 years thanks to all of your support!!




And now for the exciting announcement!
THE WINNER of a 
cake 4 a cure is...
(drumroll)

The Nolz Family!!

  
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:







Wednesday, June 23, 2021

It's Dravet Syndrome Awareness Day AND your LAST day to donate!

 Today is Dravet Syndrome Awareness Day and your last chance to donate to "a cake 4 a cure!" 

Donate now and help us to make it to $1500! If you need more details on the fundraiser, visit our previous blog post for more info: https://littleluella.blogspot.com/2021/05/this-year-is-my-eighth-annual-cake-4.html

Are you wearing purple today? Send us your pictures! A few months ago we did our Dravet Hat fundraiser and several people shared pictures in their hats! Thank you all for your support of Luella and DSF and helping us raise awareness!!

 

 https://youtu.be/1bMqWkRvdME

Stay tuned tomorrow to hear the official
"a cake 4 a cure" winner announcement!!