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!

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!!

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

 

 

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:

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

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!!