"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

Monday, May 14, 2018

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!!

Saturday, May 12, 2018

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!!
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!! 

**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 
 shirts this year!! 
Be on the lookout for more information in the next week or so.

Wednesday, May 9, 2018

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!!


Monday, January 1, 2018

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. 

Sunday, December 31, 2017

Please be in prayer

We hoped to close out this year with only three seizures for the entire year... however as Luella is currently battling some bug and her temperature keeps rising, it's looking like we may end up dealing with a seizure today. We had hoped to get to January 14th and have a new record of 175 days!! I know with prayer that can still be possible!! She currently has a temp of 102. Please pray we can get through this illness without a seizure. Thank you and Happy New Year!!

Thursday, November 16, 2017

An Update... 2nd Grade and 8 years old!

This is a LONG overdue post!! I can't believe I haven't even posted since before school started!! Just a quick note that she is currently 116 days seizure-free!!! Now if you want to read the long details below, feel free...

Luella starting the 2nd Grade!
Luella started 2nd grade in September and is doing SO well!!
She has had a few bumps in the road as far as following directions and staying on-task in the classroom. If you recall, last year she basically didn't visit the special ed room at all by the end of the school year. The special ed teacher checked in on her in the classroom from time-to-time, but basically she was with her peers the whole day. In 2nd grade, more independent work is expected and Luella's attention skills are lacking a bit. In her best interest, she is visiting the special ed room twice a week now for 20 minutes each time to catch up on any work she might have but mostly working on her attention skills and following her teacher better. She is working on it! We'd like to avoid adding meds to help her focus so we are hoping things will only improve.

Luella has a new paraprofessional working with her this year and she is another tremendous lady and we couldn't be happier! Her para from last year still is riding the bus with Luella so she is happy to see her some during the day too. We are so fortunate to be in the school district we are and have the support available that Luella requires!

At the end of September Luella had her yearly neurology appointment at Gillette Children's. This time we didn't get to the beloved Dr. Wical. Last year we knew Dr. Wical would be retiring so we took her referral and set up an appointment with Dr. Williams. We were happy to visit with Dr. Williams and of course she was thrilled with how well Luella is doing! Luella will be visiting Gillette again in January for another neuropsychology visit and testing. It will be a LONG day with 6 hours of testing!

In October our "Little Luella" turned EIGHT!! I don't care how old or big she gets, she will always be our "Little Luella"! It's hard to believe she is already 8 though... I'm not sure how that time went by so fast! Luella celebrated her birthday with an 😆😍 EMOJI-themed 😊😄 party with many of her classmates and friends. She choose to go bowling so that was a pretty crazy and fun time with FOURTEEN 7-8 year old girls!! Of course she had a VERY specific idea of what her cake should look like. We sat down and I sketched it out as she described what she wanted. I got to work and she was pretty happy with the end result! 😍 Two tiers... the top funfetti and the bottom marble. LOTS of emojis and FUN!

And now it's already NOVEMBER!! If you are friends with me on facebook you've gotten reminders to be wearing your PURPLE this month!! I'll take this opportunity to tell the rest of you now! Wear your purple and share pictures with me please!! We love to spread awareness! 💜💜

As of now, Luella has only had THREE seizures this entire YEAR!! These were all due to being sick and having a fever... now to just keep her HEALTHY!!

Thursday, August 17, 2017

25 days... not 175 days

As I looked at my calendar this morning I realized that if Luella hadn't gotten sick last month and hadn't had those fevers with a couple of seizures TODAY would have been the record-setting day at 175 days seizure-free. But, as things happen, we are at 25 days seizure-free today and still counting! Only 150 more days until we get to that goal again!! I always have those goals in my mind. Will she get there? I don't know, but I'm hopeful.

I've gotten a lot of questions from Luella lately about why God lets her have seizures? Why doesn't He just make them stop? All I can tell her is God knows the future and we don't. He has some plan in store, a plan for only GOOD to come from her seizures. I've explained that she has probably already helped LOTS of people because of her Dravet syndrome. I've explained that lots of parents just finding out about their child having Dravet are encouraged by all that she's accomplished and how well she is doing. I've told her that she has helped lots of kids in school understand epilepsy better. She's helped me put my trust fully in God. Maybe these aren't the ways we we would have chosen to do these things but it is all God's will.

The last few weeks have been full of more summer fun for Luella. She entered a couple projects in Open Class at the County Fair and was proud to get two BLUE ribbons. She completed and PASSED two weeks of swimming lessons!! I don't think I've seen her as proud as she was to find out she passed! She did a GREAT job and is really doing an amazing job in the water. It scares this mama a bit, but she LOVES the water! She also got to have a friend sleepover this week! What fun that was!! I'm so excited to see her doing more and more typical kid stuff!! And now she is getting ready for another amazing school year! She will be in 2nd grade and her backpack is packed and ready to go!! But first... a couple more weeks of summer fun!

Sleepover time!!