Seizure to close out Epilepsy Awareness Month

I was going to write a post tonight about how tomorrow is the last day in November and it's the end of Epilepsy Awareness Month. My post was going to be all about the statistics and reasons why we need a cure. Instead I'm writing about ONE reason we need a cure. The ONE with epilepsy we love the most. OUR Dravet warrior - Luella. She had another seizure tonight. A big old grand mal, tonic-clonic, full-body shaking, nasty, fall off the chair, send your glasses flying and chew up your tongue so bad you have a pool of blood forming on the floor under your head - SEIZURE. Sadly, I've seen hundreds of these. We used to have great seizure control and now... not so much. What is changing? Growing, hormones, Dravet evolving? Triggers? Needing more meds? So many questions and no definitive answers. All we can do is just keep going. Trusting that God has control of this and we just need to be here for her. We will KEEP FIGHTING for that CURE! She is our WARRIOR!

If you feel so compelled to gift a donation to the Dravet Syndrome Foundation this Christmas season, please visit - https://dravetfoundation.org/donate/

Recovering from a nasty seizure.

We have a TEENAGER... and MORE seizures

It's been awhile since I've posted an update! Since my last post in June, Luella has had THREE seizures - one at the end of July, one at the end of August and another one this past Thursday, the day before her thirteenth birthday! She did have a cold for one of the seizures but the others are all a mystery. This is the FOURTH seizure so far this year. 

We decided to increase Luella's meds now; something we haven't done in YEARS! Basically, when she started on diamox just before she turned five, we never increased the dose; even as she grew! She wasn't having seizures and we just decided that it wasn't necessary to change if things were going well. Now is the time. We are hoping a simple adjustment of meds will get us back to that seizure-free state! Meanwhile, it makes me nervous letting her be alone to do things. I feel like I need to constantly check in on her. This is something I've taken for granted up until a year ago when we got to celebrate over 2 years of seizure-freedom. Just another lesson that Dravet syndrome is not constant. We need to change and adapt to what is currently happening. Our prayer is that this will be the worst of what we have to deal with and hopefully things will improve again. 

I was so sad to get the call from Ashlyn while I was at work on Thursday that Luella was seizing. The kids had a break from school for a couple days and Ashlyn was home keeping an eye on Luella while Jim and I were at work. I raced home and by then the seizure had stopped but Luella had blood on the front of her shirt from biting her tongue so hard again. Chewing up her tongue has been a common occurance with the last several seizures. It's so hard to see her do that and know we can't do anything about it. It makes for very painful eating and talking for several days afterwards. 

The timing of this last seizure was sad since Friday was her 13th birthday. By Friday she was feeling better but just dealing with a sore tongue. We celebrated at home with family on Friday night. Luella really wanted to learn to make macarons so we had a MAC-MAKING date and she learned to make them all on her own. Her flavor choices were salted caramel and strawberry cream cheese! YUM! On Saturday we extended the party! She wanted her birthday theme to be PIXELS and we visited several area arcades to get in as many 80s retro, 8-bit (PIXEL) games as we could... PacMan, Space Invaders, Tetris, Pong, etc... It was a fun weekend of celebrating our new teenager! Hard to believe she is thirteen! Hopefully the medication changes will help and we can once again celebrate a nice LONG seizure-free streak!! 

Seizure Recovery Nest made by Ashlyn.

Luella piping her OWN macarons!

FANCY!

"Pixel" 13 made by Luella!

Space Invaders with Ashlyn.

Gaming with dad and Ryker.

Four-player PacMan!

Luella WON!!

CAMP OZ!

What a week it was!! Luella attended Camp Oz in Hudson,WI June 19 - 24 and had a blast! She's already talking about camp next year!

What is Camp Oz? (From the Epilepsy Foundation of Minnesota's website.)

Founded in 1982, Camp Oz is a traditional summer camp that provides a safe and fun camping experience for youth ages 9–17 with epilepsy.

Camp Oz is intended for youth with epilepsy, and siblings, ages 9-17 who have a high level of independence. Traditionally, campers enjoy activities like swimming, horseback riding, team-building exercises, and more. Space includes 15 cabins, two modern bathroom/shower buildings, an indoor lodge/dining hall/activity center and beachfront access. 

Luella was all ready to go to Camp Oz in 2020. You can take a sibling and Ashlyn was also signed up to go with Luella, then COVID hit. Camp was cancelled. This was the first year Camp Oz was back! Luella was ready to go - even without her sister since Ashlyn was also gone that week for a choir trip to NYC.

Jim and I dropped Luella off at camp on Father's Day, June 19. It was HOT. No air conditioning in the cabins but it wasn't too bad. Each camper brought their own personal fan. We helped Luella set up her sleeping area and she met her cabin counselors. Luella's cabin had 7 girls, 2 camp counselors and a cabin nurse. I felt very confident in leaving Luella at camp and knew she was in good hands. 

Today pictures from camp were shared with the families and it definitely looked like a fun time. Swimming, archery, games, rock climbing, camp fires with s'mores, dancing, songs, crafts, horses, etc... WHEW! 

Luella filled out a camper survey the last day of camp. One of the questions was, "What was the best part of camp?" Her reply? "Being away from my parents!!" The camp staff got a kick out of that! I get it... she basically doesn't get to be away from us much at home. She gets a little freedom to be outside at our house, or at the neighbors, with friends, but she can't just go to the park or go off on her own. At camp she had more freedom and she loved that! I hope and pray she continues to do so well and can have more experiences like these!

Luella (far left) and her cabin mates.

 

Camp Oz 2022
(Luella is right above the purple heart.)

Camp Oz staff are truly amazing! They are so well organized and they do all the right things to keep kids like Luella safe while away from home and getting to do something so many kids do every summer without any extra thought. A LOT of thought goes into Camp Oz and we thank all those who made this week of camp so amazing for Luella and 60+ campers! 

If you'd like to read the camp blog about the daily activities during
Luella's week you can do that here: 

https://www.epilepsyfoundationmn.org/about-efmn/blog/

WOW! Another spectacular fundraising year!! AND WE HAVE A WINNER!!

 

I'm excited to announce that YOU helped us raise

$1,570

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 $13,366 over the past 9 years thanks to all of your support!!

And now for the exciting announcement!

THE WINNER of a 

cake 4 a cure is...
(drumroll)

Brooke VandenHoek!!

  

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/SPaxcQnpxcM

Thank you again and please stayed tuned 

next JUNE for something big for

YEAR TEN!!

 

 

9th Annual "a cake 4 a cure" - DONATE TODAY

 

This year is my NINTH 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!! Every year we do this we are so amazed by all the "regulars" who continue to support Luella and our quest for a CURE! If this is your first time donating, we appreciate YOU too!! We could not do this without all of you!

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 at NOON on June 23rd and 

a winner will be announced later that evening! 

ALL money will be donated to the Dravet Syndrome Foundation 

in honor of Luella and to help find a cure!  

 

Over the past 8 years we've sent OVER $11,500 to the 

Dravet Syndrome Foundation!! 

THANK YOU!!!

Last year's winner was The Nolz Family!

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. Please note if you live far away you will not win a cake but I will ship 2 dozen cookies (decorated sugar cookies or chocolate chip cookies)! I will deliver a cake to the winner in Luverne, Sioux Falls or Estelline, SD 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... 

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.  

The winner from 2020 had cookies shipped!!

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 noon on June 23rd and a winner will be announced on Luella's blog later that evening!! 

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!

 

 

 

Celebrating 2 years seizure free last summer.

Luella made it to 759 days seizure-free in 2021!

She did have another seizure out of the blue in April - no illness or anything. We are hopeful she is on the way to another long seizure-free stretch!

THANK YOU EVERYONE!!

April Fool's... Seizure - and it's not a joke

I've already shared about this seizure on social media but I wanted to make a post here as well for those that just follow on the blog and also because this is kind of my diary; something I can look back on and reference in the future.

Luella had a seizure on April Fool's Day and it was not a joke. It was just after 5pm, she was on her computer in the room just off the kitchen. I was in the kitchen getting ready to make supper. I heard a loud crash and I expected Luella to say something like "whoops" but it was silent. I ran in to see what happened. Her chair was tipped over she was the opposite direction. Her face hit the bottom of the chair next to her. Her glasses were off her face. She was having a tonic clonic (grand mal) seizure. Lots of jawing chomping, bloody saliva everywhere. It's been awhile, but this is a seizure. We've been through hundreds of these, but before this seizure, she's only had 2 in the last 3 1/2 years. I feel out of practice but the same feelings and emotions rush over me just as they did for those first seizures when she was a little baby. I'm crying and praying over her. Her lips are blue. Arms and legs stiff and shaking. It feels like forever and then she breathes out a big sigh. The sigh that marks the end of the seizure. I thank God for letting it stop without the need for rescue meds. I wipe the blood off her face. Her body relaxes. She sleeps. 

Jim was there waiting with the rescue meds and watching the time. Once she was asleep we tried to move her to the living room. Our Luella isn't so little anymore! We ended up waiting a little bit. I talked to her to see if I could rouse her enough to move. She did wake up a little and Jim helped her walk to the couch. As soon as she was on the couch she was asleep again. 

I tried to position her a little better and twisted as I was lifting her legs and threw my back out! Instant pain! I fell to my knees and cried. I've also done this before.

Thankfully Luella escaped this seizure with just a sore tongue. She didn't remember anything about the seizure starting. She didn't have a fever and isn't sick so we are just praying this was an isolated incident. Of course random seizures like this are very nerve-wracking. Luella has had more freedom lately to be on her own - at school and at home. We will have to be more vigilant about keeping an eye on her.

And of course this comes as we've just completed registering Luella for her very first sleep-away camp this summer. She is planning on going to Camp Oz - a camp put on by the Epilepsy Foundation of Minnesota for kids with epilepsy. I was a little nervous about sending her away from us for a week anyway so hopefully she won't have anymore seizures between now and June! 

Luella had planned to go to Camp Oz in June 2020. Campers can take a sibling and Ashlyn was on board to go with her. Then COVID hit and everything was canceled. Ashlyn would have been happy to go with Luella this year but unfortunately Camp Oz is the same week as Ashlyn's choir trip. Not sure how I'll survive that week!!

Today is better. Luella slept well. I slept ok. My back is improving. Much less painful than yesterday! 

 Please pray that this was just a random seizure and not the start of something different for Luella. Thank you!!