"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 25, 2015

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!!

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!!