Update and Epilepsy Awareness Month

I'm not quite sure how I let FOUR months go by without a post! I guess life got busy... So the last post ended Luella's super long seizure-free streak of 180 days. She did have another seizure about a month later on July 23. We were on vacation and she had a seizure just after falling asleep... this time NO fever though. We haven't seen a seizure without a fever for quite a long time. We figured it was due to poor sleep over the previous 5 nights while on vacation... to bed late, up early. She hasn't had one since so we are at 102 days!

We are SO SO fortunate that she is doing so well! She is really thriving. She started THIRD grade in September and tuned NINE last month! She is doing great at school. She is pretty much in the typical classroom all the time. She can check in with her special education teacher if needed but for the most part she is getting her work done in the classroom with her peers. She's a smart little lady - reading at grade level, loves math, learning cursive writing... everything a typical third-grader should be doing!

At the beginning of every school year I stop by all the sections of Luella's grade and visit with the kids about epilepsy and seizures. Most of the kids have heard the same thing for four years now but there are always new students along the way and it's a good refresher for all the kids. I've read them books in the past about epilepsy but they didn't always apply to Luella 100%. This year I made my own Shutterfly book  about Luella and took it to read to the kids. They LOVED it! It was fun to showcase photos of Luella and how epilepsy specifically affects her. We always have a question time at the end and as the kids have gotten older I've been so impressed by the questions they have asked. It's great helping them learn and bringing more awareness to epilepsy!! Which brings me to the fact that November is Epilepsy Awareness Month!!

If you feel inclined to wear some purple this month to spread awareness for epilepsy, we'd love for you to share a photo - email me or tag me on facebook!

Also, I do still have a few (various sizes) of the newer "Team Luella" shirts I designed this summer. If you'd like one, let me know!!

The birthday girl!! NINE already!!

If you'd like to read the Luella's epilepsy book yourself, I've shared it on Google Photos -

 https://photos.app.goo.gl/jc6npRwKA4hXy6vf9 

I put this together very quickly so there are a few typos and if I print it again, I'd change a few things.... but I think it's a cute book and I hope you like it... maybe you'll learn something new too!

Click to view Luella's epilepsy book!

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. 

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!!