"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

Tuesday, May 23, 2017

FOURTH ANNUAL a cake 4 a cure Fundraiser

The fourth annual Dravet Syndrome Awareness Day is coming up soon - on June 23rd... in just ONE MONTH! That means my fourth 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/dravetsyndromefoundation-809095 
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 3 years we've sent over $4,000 to the Dravet Syndrome Foundation!!

Last year's winner was Vicki Murra. Her cake will be in the works this year... I was busy during the time she wanted a cake last year so she is on my calendar!! I think it'll be something fun for her boys' birthday!! :-)

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... this year I decided 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 pick up the cake in Luverne.

Please visit the fundraiser website to make a donation!! 

**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 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... only 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. 

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 and the fundraising site 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/ 

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!
And as always... please share those purple pictures with us!!

Thursday, February 23, 2017

Seizure strikes again...

We've been having such a fun time counting Luella's seizure free days... today she made it to 174 days and that's where we stop this time. Shortly after reading "Silverlicious", saying bedtime prayers with Luella asking God once again to take her "seizures away forever", singing bedtime songs and hugs and kisses... she had a seizure.

Luella has had a cold. I thought she was getting a little better but was hit with some chest congestion and now a cough today. She didn't feel hot at bedtime but did have a fever of 101 after her seizure. Thankfully the seizure stopped all on its own tonight without any meds - not common for a bedtime seizure so we are thankful for that. She immediately went into her shivering - which she does after almost every seizure. I asked her if she was cold and she replied "Yeah" - another thing she doesn't often do after a seizure. I gave her some ibuprofen and hopefully she doesn't spike another fever during the night. I snuggled a bit then left her to sleep. Then I shed my tears.... I will have to tell her tomorrow that she had a seizure.

But... we are grateful for 174 days. That was the longest EVER! And we'll look forward to the next big long run and hopefully that starts tomorrow!

Thursday, February 2, 2017

Celebrating 150

On Monday, January 30th Luella celebrated 
150 days of seizure freedom!!

She has blown past her previous record of 122 days set last summer! We are SOO excited for her. Of course we had to celebrate a little bit... She requested pizza so when she got home from school she helped me make some yummy pizza. (She LOVES to help in the kitchen!)

She also requested a cookie "cake"... basically a giant 14" chocolate chip and M&M cookie that I made and decorated for her! She was thrilled! SUGAR HIGH!??! (Thankfully she was smart and scraped most of the frosting off before eating.)

It's amazing to see her keep going everyday. She prays every night for God to "keep the seizures away forever".... I pray that too. I know that when that next seizure comes, she will just pick up and start the count again without missing a beat. She is so strong.

I have to say last Saturday when Jim suggested we go tubing as a family, I had a teeny tiny part of me inside that wanted to stay home and keep her safe and not risk a seizure. I knew I couldn't do that. She is enjoying life and all it has to offer and we want her to do all that she can! We went and we all had a terrific time! When the rest of us were tiring out, SHE was the one wanting to stay even longer!

Brave Luella ready to hit the hill!

Luella having a great time tubing!

Love family times like these!
We feel so grateful for these last 153 days now, and look forward to each seizure-free day Luella is granted going forward! We pray for God's will and thank you all for your continued love and support, and most importantly, your prayers!

Friday, December 16, 2016

Luella's Flight to the North Pole

Luella got to take part in a very special experience on Wednesday. Make-A-Wish Minnesota sent Luella an invitation to take part in Sun Country Airlines "Flight to the North Pole". She's been invited every year since her Wish trip but we just haven't been able to make it work. This year I wanted to make sure to make it and fortunately the weather cooperated and Luella and I made the drive up to Minneapolis on Wednesday. It was a LONG day - driving up to the cities, taking a little time to shop at Ikea (that part was for me), then on to park and get on the bus to head to the airport!

We got off the bus and headed to ticketing to get our tickets to the "North Pole". Luella knows we didn't really go to the North Pole, but it was fun no matter what! Everywhere we went we were greeted by "elves" and so much festivity! We got our tickets and headed to the gate. Up at the gate area there were of course more elves but also lots of team mascots and fun! Soon it was time to board. The plane was all decked out and the flight attendants were dressed as elves too. The kids shut their window shades and the plane "took off"! The pilot revved the engines and taxied around while everyone was served supper on the plane. When we "arrived" we had to wait a bit for Santa to signal that he was ready for the kids. Then it was time to get off the plane and visit Santa!

We got off the plane a few gates down from where we boarded. They had transformed the area into a fun place to meet with Santa. Luella was so excited to meet Santa and tell him what she wanted for Christmas. Santa took a few minutes to meet with each of the almost 70 kids there. When it was Luella's turn she made sure to tell Santa she wanted a scooter for Christmas. Then Santa gave her a little early gift to take home - a little stuffed Cambri toy and a Sun Country airport playset! Luella also got a special Rudolph balloon hat! Luella wasn't sure if this was going to be the "real" Santa but after he greeted her with a "Ho, Ho, Ho" she told me she knew it was the real Santa!

There wasn't a "return" trip from the North Pole so I was glad Luella understood it was a pretend trip. I heard a few kids say "but don't we need to fly home?" ;-) Soon it was time to get back on the bus to head back to the parking garage! We stopped for gas and Luella changed into PJs for the ride home. It was about 9:15 when we got on the road! Thankfully Luella was out within about 30 minutes... despite all the cookies and candy they filled her up with! I was thankful for good driving conditions and a list of podcasts to keep me awake for the drive home. Luella slept the entire way home and we pulled in the driveway at 12:30!

It was such a fun and magical night for Luella. I'm so glad we had this opportunity. Make-A-Wish Minnesota and Sun Country Airlines did an amazing job making sure all the kids had a terrific time!

You'll have to view the video slideshow to see all the fun!! https://youtu.be/pqLAZZ3es8g

Tuesday, November 29, 2016

Giving Tuesday

Today is Giving Tuesday - a movement to create an international day of giving at the beginning of the Christmas and holiday season. We are passionate about raising funds for the Dravet Syndrome Foundation and their work to find a cure. If you are wondering where to share your gift today please consider DSF. You can donate here: https://app.etapestry.com/onlineforms/DravetSyndromeFoundation/onlinecontributions.html

I'm sure you are all aware of all Luella has been through but here's a little reminder. This short video represents only a handful of the experiences we've had with Dravet syndrome. And this would be only a small fraction of what some kids have to deal with. Through it all we consider ourselves quite fortunate but we just don't know what Luella's future holds. We need a cure. So many others need a cure. Thanks for taking a minute to read this, watch the video and consider a donation. God bless you!

Sunday, November 13, 2016

Purple November ... and many updates.

How did I let it get to be November 13th before I wrote about Epilepsy Awareness Month?! By now you should all know the drill.... November is Epilepsy Awareness Month and purple is the color. We love to see everyone wearing purple during the month and supporting 65 million people around the world who are living with epilepsy, especially one exceptionally cute little one living with us! If you do wear purple sometime this month - send me a picture! And thanks for the support!

In other news Luella is currently at 72 days seizure free!! Praising God for all those wonderful days and fun times had without seizures! Luella's leg continues to heal well. She had a follow up with her orthopedic doctor and everything looks great. We are officially done with the wheelchair and walker! Luella was so glad to finally ride her bike again and super excited to get to ride the bus for the first time this school year!


We also just recently had an appointment with Luella's neurologist in St. Paul. Dr. Wical was SO thrilled with how well Luella is doing. Luella is for sure beating the Dravet odds and we are so thankful and pray that she will continue on this path! We were sad to find out that Luella's beloved doctor will not be seeing patients anymore. Dr. Wical has helped us during some of Luella's most troubling times and we will miss her so much! We were lucky to snap a quick picture of Luella with Dr. Wical before we said our good-byes. We got some great referral options from Dr. Wical and we will continue to take Luella to Gillette Children's.

Luella and Dr. Wical
While at Gillette Children's we also checked in with a pediatric orthopedic doctor that Luella saw about three years ago. Children with Dravet syndrome often times develop gait issues and sometimes are wheelchair bound. We knew from our earlier consult with this doctor that Luella already had the extremely loose joints common in Dravet. We wanted to check in with him again after the growth plate fracture and also to check out Luella's knees which look to be more "knock knee'd" lately. He did verify that yes, her legs and hips are extremely flexible - much like how we are born. Over time as kids get older those ligaments tighten and we aren't as flexible. Luella is still very loose like a newborn and she has a bigger range of motion in her knees and hips. Right now there isn't much we can do. Just keep an eye on things and make sure she remains active - not a problem there!! We'll see him again in two years. 

Look at that cute little missing tooth spot!! 
One last SUPER EXCITING bit of news from our visit to St. Paul was that Luella LITERALLY lost her first tooth!! I was talking with her after supper and there was a gap in her bottom teeth!! We have no idea where that tooth ended up!! I didn't even know it was loose!! When I checked it out I was surprised to see that she had a permanent tooth already coming in just behind where that tooth was! AND the tooth next to it was very loose too!! I guess I need to pay more attention to her teeth!

Luella worked on that 2nd loose tooth all night. The next morning it was SO loose. I told her she needed to pull it out before we LOST that one too. I gave it a little tug but she didn't like that so I told her to try really hard. She grabbed a kleenex and pulled and says, "Here's my tooth!" She was so proud! When we got home on Wednesday night she couldn't wait to get her little tooth pouch - never used before, and carefully tuck her tooth inside. That sweet Tooth Fairy left her TWO golden dollar coins to make up for the other tooth that was lost. 

There are TWO missing tooth spots!! ... and a cute little Rainbow Dash hoodie PJ wearing girl!! 

Don't forget to wear some purple this month!!

Sunday, October 23, 2016

She's SEVEN !

We just wrapped up an amazing week celebrating our amazing Little Luella! It's hard to believe she is SEVEN!! She's actually not so "little" anymore! <sniff, sniff>

On Sunday - October 16th, Luella celebrated her birthday with her friends and a fun swimming party! The girls made a special beaded bracelet with a pretty silver sea charm to take home. We had strawberry cake with cream cheese frosting at the request of the birthday girl! Luella got many fun gifts. It was a super fun party topped off with about an hour of swimming! (Seizure-FREE swimming!!) Luella also got to bring a special treat to school on Wednesday (since there wasn't school Thurs or Fri). Then a trip to the farm to celebrate on Thursday and finally on Friday, October 21st - her ACTUAL birthday... supper at Pizza Ranch and then off to see the firemen's movie "The BFG"! Oh and the firemen let her climb up and honk the horn on the fire truck too!! It was an amazing week celebrating our amazing Luella!!

Luella has been on a roll again with seizure-free days.... we are currently counting at 52 days!! She is also doing great and walking all over the place without even using a walker anymore! We'll be checking in with her orthopedic doctor on Monday but we anticipate hearing that everything is healing up great. Hopefully getting to ride the bus to/from school again will be on the agenda this week too!!

I'll leave you with a few birthday week pictures... More pictures can be seen online here: https://goo.gl/photos/8rimWY1M5fvDF38H9

The little mermaid herself!

Having fun swimming!

A cozy mermaid blanket from mommy and daddy!

A birthday funfetti donut for breakfast!

She's SEVEN!!