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!!

How about helping us celebrate?!?!

Hey everyone! So.... after Luella's last seizure - on New Year's Eve, I decided to stop counting days and making Luella so aware of "records" etc... She was sad last time that we missed setting a new record by a couple weeks. We haven't been counting days and I haven't told her what is coming up VERY soon!! If we continue on this seizure-free path... on Sunday, June 24th... the day AFTER Dravet Syndrome Awareness Day, Luella will have a NEW SEIZURE-FREE record of 175 days!! I'm so hopeful that she will get there this time and every day after that will be a new record! It's amazing how well she is doing and we are SO GRATEFUL for all your love and support! Luella doesn't know about this record and won't know unless she gets there on Sunday!!!

We are SO CLOSE to a new record!!!!

In celebration of Luella and Dravet Syndrome Awareness Day we'd love for you to consider a donation to the Dravet Syndrome Foundation as part of my "a cake 4 a cure" fundraiser! We have a goal of $1500 and we are just a little over half way there with only a few days left (June 23). You don't have to be local to donate... I will pick a winner from all donations and if you happen to be far away I will make you specialty sugar cookies and ship them!

Even though Luella is doing SO well right now... she still has Dravet and she will have Dravet her whole life. She needs a CURE. As she gets a little older we anticipate more seizures as her body changes and hormones take over. That time could be especially bad for her and all the fundraising we do now can help!

Remember to wear PURPLE on Saturday, June 23rd - Dravet Syndrome Awareness Day!! And share your pictures!! The new "Team Luella" shirts are DONE and I'll be picking them up on Monday... so if you ordered, get in touch with me and we'll get you your shirts before the weekend!! I hope to ship the far away ones right away on Tuesday so you should have those too!! Let's make the world PURPLE on Saturday!!

Get those donations in soon!! I'll take checks or cash any time too. (Checks can be made directly to DSF!)

Thanks everyone!! 

Donate HERE!

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

In honor of the amazing dad Luella has on this Father's Day! Jim has helped me on this journey with Luella SO much... I could NOT have done this alone! 

 

ONLY 2 weeks left!

Only 2 weeks left for WHAT?!? Well... you only have 2 weeks left to get in on my 5 ANNUAL "a cake 4 a cure" fundraiser!! AND 2 weeks from today on June 23rd is the annual Dravet Syndrome Awareness Day! AND some exciting news.... Luella has continued to remain seizure-free since her last seizure on New Year's Eve... which means if we continue down this path JUNE 24th will mark a NEW RECORD of seizure-freedom for her!

 

PLEASE help us celebrate Dravet Syndrome Awareness Day and Luella's progress by donating to our fundraiser and just maybe you will win a CAKE or COOKIES custom made by me!!
I will not ship a cake but I WILL ship cookies so don't hesitate to donate if you live far away! We appreciate all your continued support to help find a cure for Dravet syndrome! Details on the fundraiser can be found in this blog post - http://littleluella.blogspot.com/2018/05/fifth-annual-cake-4-cure-fundraiser-2018.html

Donation site - https://www.youcaring.com/dravetsyndromefoundation-1186879

We'd LOVE to make our goal of $1500 for 

the Dravet Syndrome Foundation!!

Remember to wear purple this month to help raise awareness!! And especially on June 23rd - Dravet Syndrome Awareness Day!!  

 

If your ordered one of our new "Team Luella" t-shirts, they will be ready soon! 

I will keep you posted on the status! 

 

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!!!! 

Seizure to end 2017

Well, as much we hoped to avoid a seizure with the fever Luella had on New Year's Eve, it just wasn't meant to be. I did put a quick update on Facebook, so you may have already heard. Luella did have a seizure just before 5 pm on Sunday. At bedtime her temp was more normal and she slept fine. This morning (Monday) she woke up with a normal temp. As the day went on her temp went up. Thankfully she hasn't had another seizure but she won't be heading back to school tomorrow. Not sure what's going on with her. She doesn't seem to have a cold although today she have a bit of a stuffy nose.

We appreciate all the messages and prayers. Hopefully she can get through this quickly.

I had hoped to make it to a new seizure-free record on the 14th.... After hearing Luella feeling a little sad about starting the count over, I decided to stop counting. At least not letting HER know the number. I don't want to put any pressure on her for something she has no control over. If she happens to hit a record, we'll celebrate THAT day. She asked me the other day if other kids with epilepsy have more seizures than she has and I said, yes, she is really quite lucky... We know so many other warriors who battle this daily! We are so grateful for how well Luella is doing! We'll take whatever happens and keep on going!! 

Luella got to celebrate a little on New Year's Eve even while battling a fever.