"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, January 1, 2018

Seizure to end 2017

Well, as much we hoped to avoid a seizure with the fever Luella had on New Year's Eve, it just wasn't meant to be. I did put a quick update on Facebook, so you may have already heard. Luella did have a seizure just before 5 pm on Sunday. At bedtime her temp was more normal and she slept fine. This morning (Monday) she woke up with a normal temp. As the day went on her temp went up. Thankfully she hasn't had another seizure but she won't be heading back to school tomorrow. Not sure what's going on with her. She doesn't seem to have a cold although today she have a bit of a stuffy nose.

We appreciate all the messages and prayers. Hopefully she can get through this quickly.

I had hoped to make it to a new seizure-free record on the 14th.... After hearing Luella feeling a little sad about starting the count over, I decided to stop counting. At least not letting HER know the number. I don't want to put any pressure on her for something she has no control over. If she happens to hit a record, we'll celebrate THAT day. She asked me the other day if other kids with epilepsy have more seizures than she has and I said, yes, she is really quite lucky... We know so many other warriors who battle this daily! We are so grateful for how well Luella is doing! We'll take whatever happens and keep on going!! 

Luella got to celebrate a little on New Year's Eve even while battling a fever. 

Sunday, December 31, 2017

Please be in prayer

We hoped to close out this year with only three seizures for the entire year... however as Luella is currently battling some bug and her temperature keeps rising, it's looking like we may end up dealing with a seizure today. We had hoped to get to January 14th and have a new record of 175 days!! I know with prayer that can still be possible!! She currently has a temp of 102. Please pray we can get through this illness without a seizure. Thank you and Happy New Year!!

Thursday, November 16, 2017

An Update... 2nd Grade and 8 years old!

This is a LONG overdue post!! I can't believe I haven't even posted since before school started!! Just a quick note that she is currently 116 days seizure-free!!! Now if you want to read the long details below, feel free...

Luella starting the 2nd Grade!
Luella started 2nd grade in September and is doing SO well!!
She has had a few bumps in the road as far as following directions and staying on-task in the classroom. If you recall, last year she basically didn't visit the special ed room at all by the end of the school year. The special ed teacher checked in on her in the classroom from time-to-time, but basically she was with her peers the whole day. In 2nd grade, more independent work is expected and Luella's attention skills are lacking a bit. In her best interest, she is visiting the special ed room twice a week now for 20 minutes each time to catch up on any work she might have but mostly working on her attention skills and following her teacher better. She is working on it! We'd like to avoid adding meds to help her focus so we are hoping things will only improve.

Luella has a new paraprofessional working with her this year and she is another tremendous lady and we couldn't be happier! Her para from last year still is riding the bus with Luella so she is happy to see her some during the day too. We are so fortunate to be in the school district we are and have the support available that Luella requires!

At the end of September Luella had her yearly neurology appointment at Gillette Children's. This time we didn't get to the beloved Dr. Wical. Last year we knew Dr. Wical would be retiring so we took her referral and set up an appointment with Dr. Williams. We were happy to visit with Dr. Williams and of course she was thrilled with how well Luella is doing! Luella will be visiting Gillette again in January for another neuropsychology visit and testing. It will be a LONG day with 6 hours of testing!

In October our "Little Luella" turned EIGHT!! I don't care how old or big she gets, she will always be our "Little Luella"! It's hard to believe she is already 8 though... I'm not sure how that time went by so fast! Luella celebrated her birthday with an 😆😍 EMOJI-themed 😊😄 party with many of her classmates and friends. She choose to go bowling so that was a pretty crazy and fun time with FOURTEEN 7-8 year old girls!! Of course she had a VERY specific idea of what her cake should look like. We sat down and I sketched it out as she described what she wanted. I got to work and she was pretty happy with the end result! 😍 Two tiers... the top funfetti and the bottom marble. LOTS of emojis and FUN!

And now it's already NOVEMBER!! If you are friends with me on facebook you've gotten reminders to be wearing your PURPLE this month!! I'll take this opportunity to tell the rest of you now! Wear your purple and share pictures with me please!! We love to spread awareness! 💜💜

As of now, Luella has only had THREE seizures this entire YEAR!! These were all due to being sick and having a fever... now to just keep her HEALTHY!!

Thursday, August 17, 2017

25 days... not 175 days

As I looked at my calendar this morning I realized that if Luella hadn't gotten sick last month and hadn't had those fevers with a couple of seizures TODAY would have been the record-setting day at 175 days seizure-free. But, as things happen, we are at 25 days seizure-free today and still counting! Only 150 more days until we get to that goal again!! I always have those goals in my mind. Will she get there? I don't know, but I'm hopeful.

I've gotten a lot of questions from Luella lately about why God lets her have seizures? Why doesn't He just make them stop? All I can tell her is God knows the future and we don't. He has some plan in store, a plan for only GOOD to come from her seizures. I've explained that she has probably already helped LOTS of people because of her Dravet syndrome. I've explained that lots of parents just finding out about their child having Dravet are encouraged by all that she's accomplished and how well she is doing. I've told her that she has helped lots of kids in school understand epilepsy better. She's helped me put my trust fully in God. Maybe these aren't the ways we we would have chosen to do these things but it is all God's will.

The last few weeks have been full of more summer fun for Luella. She entered a couple projects in Open Class at the County Fair and was proud to get two BLUE ribbons. She completed and PASSED two weeks of swimming lessons!! I don't think I've seen her as proud as she was to find out she passed! She did a GREAT job and is really doing an amazing job in the water. It scares this mama a bit, but she LOVES the water! She also got to have a friend sleepover this week! What fun that was!! I'm so excited to see her doing more and more typical kid stuff!! And now she is getting ready for another amazing school year! She will be in 2nd grade and her backpack is packed and ready to go!! But first... a couple more weeks of summer fun!

Sleepover time!! 

Sunday, July 23, 2017

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!!

Saturday, June 24, 2017

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!)


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


Friday, June 23, 2017

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!