Good News, Bad News

I'll actually jump to the bad news first since I want to leave you on a happy note....

The bad news is... Luella has had two seizures so far this month. Kind of throwing off her average of one per month but we'll see where we go from here. The seizure earlier in the month was on May 8th just after falling asleep at bedtime. She ended up having a fever. Thankfully whatever illness she had was short lived and she only had that one seizure. Then this past Saturday she had a seizure while playing outside. Both seizures stopped on their own which was great especially with the seizure while sleeping because those are usually harder to stop. We are praying to get back to one seizure every 4-5 weeks or LONGER!!

AND... the good news is Luella has had one week of swimming lessons with NO seizures while swimming!! She started lessons on the 18th and is doing great! She is in an actual class and I'm right there with her. There are five kids in her group and I can be right there beside her in case she has a seizure while the instructor is out working with one of the other kids. Last year she had a one-on-one teacher and pretty much had the whole baby pool to herself. It was constant activity and with all that excitement she had a seizure on the first day of lessons. This year most her time is spent sitting on the edge of the pool waiting her turn so she really doesn't get overly excited. It is going great except that she really doesn't like sitting there waiting - she'd rather be in the water "swimming"! The last 5 minutes of every lesson is free time and she REALLY enjoys that!! She's also gotten to jump off the diving board on two of the days last week. She LOVES it!! Luella is not scared of anything! This will be her last week of lessons and we pray that she will have continue to have fun without any seizures.

No fear in jumping off the diving board!

We had a lovely gift given to our family from some very generous anonymous person! The gift of a summer family pool membership!! I still can't believe it! Someone wanted Luella (and our family) to have as much fun as possible this summer! We took advantage of this special gift and went swimming on Sunday afternoon. I was concerned that with the constant activity Luella may have a seizure... but she DIDN'T!!! She swam for an hour and a half and had the BEST time!! We are SO grateful to whoever gave us this special gift! We hope to use it many times this summer!! God Bless You!!

One happy little swimmer at lessons!!

Also, just a reminder that my fundraiser - a cake 4 a cure - is happening NOW! Please help me reach my goal of $1,000 for the Dravet Syndrome Foundation.
Read the blog about it here
http://littleluella.blogspot.com/2015/05/second-annual-cake-4-cure-fundraiser.html or visit the fundraising page - http://www.youcaring.com/acake4acure/!
I'm anxious to draw a winner and make another cake!!

SECOND ANNUAL a cake 4 a cure Fundraiser

The 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!!

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!! 

https://www.youcaring.com/acake4acure

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!

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!!

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!