"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 12, 2015

SECOND ANNUAL a cake 4 a cure Fundraiser

Dravet Syndrome Awareness DayThe second annual Dravet Syndrome Awareness Day is coming up in just 6 weeks - on June 23rd! That means my second annual "a cake 4 a cure" raffle / fundraiser is kicking off too!! Please visit the fundraising website to buy raffle tickets - https://www.youcaring.com/acake4acure
The raffle 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! Last year we sent $1,500 to the Dravet Syndrome Foundation!!

2nd annual a cake 4 a cure

I had SO much fun making the cake for the winner of last year's raffle! The cake was for Lauren who turned 5. She loves the Dolphin Tale movies and wanted a cake with Hope and Winter - the dolphins from the movie. Winter has a prosthetic tale so I incorporated that into the cake as well. It was a super fun cake to make and I'm looking forward to drawing another winner this year and making another special cake!

The winning cake from last year's raffle.

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. I WILL deliver to the Luverne, Sioux Falls or Estelline areas OR you may pick up the cake in Luverne. If you live outside these areas and do not plan to pick up the cake, you may still donate but you will not be eligible to win the cake.

Please visit the fundraiser website for more details and 
to make a donation!! 

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!

Tuesday, May 5, 2015

An amazing company...

Luella with her purple Hello Kitty!
In December at Jim's company Christmas party in the Des Moines office a "Bet" was announced and it was decided that the money raised as part of the bet would go to the Dravet Syndrome Foundation in honor of Luella! We were so thrilled to have them honor our family in this way. We've gotten such amazing local support in regards to Luella but this "bet" included offices in other (distant) locations as well! We were amazed at their generosity!

One part of the bet was that if $2,500 was raised an executive offered to contribute an additional 25% on top of what was raised.  He would also go to the extreme of growing a goatee and dressing down for work, both of which are completely out of character for him.

East Lake Spartan Chess Team Cheer Squad
They started collecting money in February and the bet officially ended on April 2. On April 15th the executive spent some time in the Luverne office... completely dressed down and sporting a very itchy goatee!  He gave Luella a purple Hello Kitty which she completed adored! The next day Jim, Luella and I drove to Des Moines for the wrap-up party for this bet and fundraiser! What an amazing day! Everyone in the office gathered to watch a couple of employees do a skit as the East Lake Spartan Chess Team Cheer Squad (from Saturday Night Live)! It was epic! They did an incredible job! It was so funny!! After the skit there was a dance-off which Luella won hands down. Then they presented Luella with a check for the Dravet Syndrome Foundation for $4,513!! We were blown away by how much money was raised!! After the event a few more donations came in to bring the final total to $4,748!!

Luella enjoyed the ice cream!

We were all treated to a delicious Ice Cream Social following the event! It was an amazing time. Jim works with some truly amazing and generous people! To everyone that made this happen and all those that donated - we can't thank you enough!!

What an amazing donation!

As Luella's shirt says... these people know how to "MAKE THINGS HAPPEN"! Thank you!!

Tuesday, April 28, 2015

Zoo, Park, Seizure

Luella has her lunch ready to go!
Luella has been doing so well!! Her average lately is about a seizure every month. On Friday Luella's preschool class had a field trip to visit the zoo and park. She was super excited!! Most of the excitement centered around the idea that she would FINALLY get to use the lunch box that we ordered with her backpack!!

On Friday morning we were off on the school bus! It was a cool day but perfect for walking around the zoo. Luella's highlight was feeding the goats! She would have stayed in the petting zoo all day if I had let her. We had a couple hours to spend at the zoo and got to see lots of fun animals.

After the zoo we headed to a nearby park to have lunch and play. Luella enjoyed eating her lunch out of her kitty lunchbox and then was ready to go play!

The park was huge and there were many buses of kids playing. Luella was off and running. It was a little challenging keeping up with her at times. I couldn't climb up and follow her easily since there were so many kids. I stayed on the ground and followed her every move praying she wouldn't start having a seizure at the top of the twirly slide! She was one day shy of going five weeks seizure-free so I was on extra high alert! After 15 minutes of solid playing I pulled her aside and had her take a five minute break. After that she was a little more calm as we went around to all the different groups of playground equipment around the park. I didn't have her take anymore breaks during the next hour of playing - then it was time to go! We made it! NO seizures!

Until.... We got on the bus and Luella was just tired out. She was asleep before we even left town. It was a 30 minute ride back to Luverne and 10 minutes into her nap I felt her body lurch forward slightly while she slept with her head on my lap. I leaned forward to look and her eyes were wide open and she was starting to drool! She was seizing. :-( We haven't dealt with a sleep - seizure since October... they are ALWAYS hard to stop. I got right to it and got her rescue meds ready. I hated to give them to her but she needed them. Two doses to stop the seizure. It had been just over six months since Luella needed rescue meds! (The last time was to stop a nap time seizure at Univesral Studios in Florida!) Luella was turning very blue, her oxygen dipped down to 38%. I was so glad I had lugged around that heavy oxygen tank all day! Her seizure lasted about 10 minutes and then she slept.

Jim met us back at the school to help get Luella off the bus and into the van. We got her home and she slept three hours! We had to wake her up eventually. Once she was awake though she just couldn't stop talking about her fun day.. the zoo, the animals, playing at the park, etc.... No memory of the seizure. Thank you God for allowing Luella to have the fun she deserved and to remember it all!

Monday, March 23, 2015

Always a seizure...

We pushed our luck on Saturday. It was Ryker's 8th birthday party and we took a group of kids to a fun arcade / play place for his party. Luella was SO excited to go there. She is always asking to go to the Brandon Pizza Ranch since the arcade is attached to the pizza place. She loves to play there but ALWAYS ends up having a seizure. She has not ONE TIME been able to play there without a seizure. We were hoping that she would do better this time.

We did some party games and had our pizza and cake first before we let Luella play. In the past we've let her play right away and then she has a seizure and is out the rest of the time making it difficult to eat, etc... This time we timed things differently. After eating and watching Ryker open his gifts we let Luella loose to play. Jim was on "Luella-time" as I packed up the party things to clear the room for the next party. He carefully monitored her playtime so she would play hard for 10 minutes then take a break and do something less intense. It appeared to be helping and she got in a good amount of play. Then literally just 2 minutes before we were going to leave - she had a seizure. She was in one of the inflatables - probably about the safest place to have a seizure. I was in the restroom at the time so Jim crawled in to grab her. The seizure was a tonic clonic (grand mal) and got the attention of several of the parents and kids playing there. We visited with a lady who had lost her daughter-in-law less than a year ago to a seizure. So heartbreaking! Thankfully Luella's seizure stopped on its own after just a couple minutes. Luella has not needed to use a rescue med to stop a seizure since her Make-A-Wish trip back in October!! That is just amazing!! We are SO thankful for that! Unfortunately thought it had only been 2 weeks since her last seizure. We are praying for another long seizure-free stretch!!

Here are a couple of pictures of Luella enjoying the party!

Ryker's party theme was mustaches!

Luella's first time running a bumper-car on her own!

Don't forget to wear purple on 
Purple Day for Epilepsy Awareness!! 

Tuesday, March 17, 2015

When to Wear Purple?

So you all know that PURPLE is the color for epilepsy awareness, right? If you don't, now you do! Purple also happens to be our Little Luella's favorite color! Works out nicely. Do you ever wonder when you should wear purple to show support for epilepsy and Dravet syndrome? The easy answer is ANYTIME you want! :-) While you can wear purple anytime, there are a few special days devoted to epilepsy awareness and Dravet syndrome awareness. The first of these special days is coming up soon. March 26th is Purple Day for Epilepsy! Wear purple on Thursday, March 26th and read more about this special Purple Day initiative at http://www.purpleday.org/index.html.

The next special purple day is closer to our hearts as it is the Dravet Syndrome Awareness Day. This day is June 23rd. This year will mark the 2nd annual Dravet Syndrome Awareness Day!! We are excited that Dravet itself has a special day and we hope you will all mark it on your calendar and wear purple for Luella and those affected by Dravet syndrome! Read more about it at http://www.dravetfoundation.org/archives/events/dravet-syndrome-awareness-day.

Finally the ENTIRE month of NOVEMBER is Epilepsy Awareness Month!! So wear purple anytime in November and help spread awareness for epilepsy! More about it at http://www.epilepsy.com/make-difference/get-involved/national-epilepsy-awareness-month.

Thank you for your continued support!! I love seeing these Little Luella shirts worn randomly by so many of our friends and family!! If anyone is interested in ordering a shirt, please let me know. If I get enough interest to keep the cost down I will place another order before June.

Tuesday, March 10, 2015

Update: Great February but seizure at school on Friday.

It's been SO long since I've written a post! I guess that's mostly a good thing. Luella had a terrific February! Not one seizure the whole month! It's such a blessing to have a more "normal" life and not having to deal with weekly seizures like we were before starting Luella on Diamox. I say "normal" because life really isn't ever "normal" but we enjoy it as much as we can! :-)

Luella ended her seizure-free streak on Friday with a seizure at school. She went FIVE weeks! This was her second seizure at school. We are so blessed to have such caring and watchful people with Luella while she is at school. Luella's class was having some play time on the playground and Luella was having lots of fun. It's hard to know what the trigger was - too much excitement, over-heating, sun, cold air, etc....  Luella also woke up that morning with lots of sneezes and a runny nose so it could have been the fact that she was getting sick. The important thing is that everyone did exactly what they were supposed to do.

I was running a few errands downtown when I got the call. When I got to school they had cleared the playground and Luella was on the ground with many teachers and the school nurse around her. She was nice and cozy as a couple of teachers had given up their coats to keep her warm. At that time it was right at the three minute mark when her rescue med (midazolam) would have been given. Thankfully her seizure stopped on its own and no rescue meds were needed. Jim arrived shortly after and we got Luella loaded up and home again. Normally she doesn't sleep so much when she doesn't have midazolam, but the seizure - and I think the combination of her having a cold - really wiped her out. She slept about an hour and half then kind of woke up but then was really sleepy all afternoon. She really didn't perk up until about 5:00 that night.

Luella is still dealing with this cold but has enjoyed playing outside a few times over the past few days when the temperatures here have gotten so amazing! We are ready for summer!!

Thanks for following along and keeping up to date on all that is happening with Luella. We appreciate all the thoughts and prayers! God is good!

Sunday, February 1, 2015

Made it 25 days

Luella's latest seizure-free stretch ended on Friday evening at 25 days. (Luella had 2 seizures at the beginning of January with an illness.) We decided to take the kids swimming at our local indoor aquatics center. We haven't been swimming there for a LONG time. Luella tends to have seizures there but last summer was able to take in almost 2 weeks of swimming lessons after getting through a couple of seizures on the first days. We were hopeful that the new med we started in September (Diamox) would offer her some more protection when doing activities like this. Unfortunately that wasn't the case. We got in the pool and she was SO excited! She absolutely LOVES to swim and be in the water. She wanted to go down the little frog slide and after about 5 minutes in the water she went down the slide and came up seizing. :-( So scary to have a seizure in the water but that's why we never leave her side. Thankfully the seizure stopped after just a minute. Usually she sleeps but I think the excitement of being at the pool and just wanting to swim kept her awake but very sad. She cried for about a half an hour. I thought about taking her home but we decided to stay and see if she could get back in the water. I tried holding her in the baby pool but she still just cried and wanted the big pool. We went in the big pool and she was still very sad and wasn't able to do anything yet. It was so sweet the number of kids that came up to offer their pool toys to Luella to try and make her feel better! After a break was called we sat out for a few minutes and she started perking up more. By the time break was over she was happier and ready to get in again. Before long she was "swimming" again like nothing happened. It was so great to see her having fun again. I hate to see her fun interrupted but we are so fortunate that she can bounce back so quickly.

I'll leave you with a recent picture of our little Luella who is getting to be so grown up!