150 Days Seizure Free... But starting over again.

We were excited to get to today and celebrate 150 days of seizure-freedom... but now today we start over again. Luella woke up at 5am this morning (Sunday) complaining of a sore throat. I checked and she also had a slight temp of 100.5. I gave her ibuprofen and tucked her back into bed around 5:20. At that time Luella started asking me a bunch of questions....

Luella: "But, I have seizures when I have a fever. Will I have a seizure?"
Me: "Maybe. But we'll be watching you."
Luella: "What happens if I have a seizure and it doesn't stop and I'm stuck in a seizure forever?"
Me: (my heart aching) "We have medicine we would give you to stop the seizure."
Luella: "What if the medicine doesn't work?"
Me: "Then we would take you to the hospital and the doctors would give you better medicine."
Luella: "What if that didn't work either?"
Me: "Then you'd ride on the helicopter again to Sioux Falls and they would take care of you there. There are good doctors that would know what to do. You will be safe."

So after comforting her enough that she felt okay to go to sleep, I went to my room at 5:30 and told Jim about her questions and then I sobbed and prayed for God to protect her and hopefully she would avoid having a seizure with this fever. Around 5:50 she whimpered a bit and I went back to her room. She was almost asleep and was talking about something but I didn't really understand what she was saying. I just told her to go to sleep. All this time I was so tired but not really wanting to go to sleep myself. I did get back into bed, then within 10 minutes I hear a noise and run to her room even before her alarm goes off and she is having a seizure! Thankfully it stopped fairly quickly on it's own and she was able to sleep until about 8am. I did take her in to get tested for strep which was negative so I guess we are just dealing with some random bug. Unfortunately this afternoon she had another seizure just before 5. This time she was awake and watching TV. Jim noticed her just gazing off and called her name. She didn't respond then went into a tonic clonic seizure. This is scary because she hasn't had an awake seizure for over a year and a half! I'm not sure what kind of illness we are dealing with but I'm praying this will be the end of the seizures.

On a more positive note... WE HAD 150 DAYS SEIZURE FREE!! Last record was 174, so we didn't beat a record but Luella had a great 150 days.... Swimming at lakes and pools, doing fireworks, jumping on the trampoline... AND driving a REAL go-cart at Thunder Road!!!! Mom was a bit nervous about that last one but she only crashed a couple of times... LOL!!

Swimming and playing in the sand at Little Boy Lake.

Losing her front 2 teeth...

At Thunder Road with Ryker.

Ready to drive her OWN go-cart!! YIKES!?!

Racing with Ryker!

Bungy Jumping

Racing in a big go-cart with mom!!

2017 a cake 4 a cure Winner Announcement!!

I've been SO anxious to see who I get to make a special cake (or cookies) for this year!! I set my goal at $1,500 this year and you all helped in exceeding that once again!!

We ended up raising $1,596!!! 

All of that money will be sent to the Dravet Syndrome Foundation to help find a CURE!! Thank you so much to everyone that contributed!! You are all amazing!! To see what DSF has been working on you can see some of the current research here - http://www.dravetfoundation.org/research/dsf-funded-research. There is some really amazing research happening and we've been blessed to send them almost $6,000 in the past 4 years thanks to your support!!

Time for the BIG announcement!!

 Jolene Krause

I'm so excited to make you a special cake or cookies!!! YAY!!!

Once again I took a video of me doing the drawing so you'd know it was done fair and square!! :-) So many friends and family are included in the drawing and I don't want anyone to think I was playing favorites!! :-) 

Here's a video of the drawing... (please excuse my raspy morning voice!)

https://youtu.be/y90I1WlbqgM

Thanks again everyone for all your support!! We are SO BLESSED to have such an amazing network of friends and family to support Luella!!

THANK YOU!!! 

Dravet Syndrome Awareness Day! 120 DAYS SEIZURE FREE

We hope you are wearing PURPLE today for the 4th annual International Dravet Syndrome Awareness Day!! If you are wearing something purple... send us a picture!!

Today Luella is 120 Days SEIZURE FREE!! 

We'd love it if you'd celebrate Luella today by donating to my "a cake 4 a cure" raffle / fundraiser! More details about the fundraiser can be found here: https://littleluella.blogspot.com/2017/05/fourth-annual-cake-4-cure-fundraiser.html and donations can be given directly to me or given online here: https://www.youcaring.com/dravetsyndromefoundation-809095
Donations will only be accepted until midnight tonight (June 23rd) and a winner will be announced tomorrow - Saturday, June 24th!! I'm SOO close to our goal... please help us out!

We made it a hundred days!!!

100 days of seizure freedom feels pretty awesome!! 101 days is even better! Yesterday was officially 100 days seizure free. I wanted to get a post written but I had a super busy day. So... that brings us to 101 days today. Luella's last seizure-free stretch was 174 days so we are hoping to keep on chugging through the summer and getting to beat that record!

The past 100 days have been full of lots of fun things... most importantly, Luella wrapped up her first grade year! In the fall we'll have a 2nd grader!! We were pleased to END the school year with 2 working legs!! ;-)

Luella is looking forward to a summer of riding bike/scooter, t-ball, gymnastics and swimming lessons!! We are amazed at all she has accomplished! A few years ago we would have been surprised to know this is where she would be now! So much to be thankful for!!

Dravet syndrome is so random and uncertain and even though Luella is doing well now we know that things can (and probably will) change at some point. That's why we continue to do all we can to raise funds for the Dravet Syndrome Foundation. PLEASE don't forget about our a cake 4 a cure fundraiser! We only have about THREE WEEKS left and we are not even close to our goal. We'd like to send $1,500 to DSF this year so please pass the word along. Also please note that ANYONE can win!! If I can't get you a cake I will SHIP COOKIES!!

Check out the details for the fundraiser on this blog post here: https://littleluella.blogspot.com/2017/05/fourth-annual-cake-4-cure-fundraiser.html

And DONATE HERE:
https://www.youcaring.com/dravetsyndromefoundation-809095 (or get me cash or a check).