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 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!!
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| Luella starting the 2nd Grade! |
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!
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!
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| 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!!
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!!
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| Swimming and playing in the sand at Little Boy Lake. |
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| Losing her front 2 teeth... |
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| At Thunder Road with Ryker. |
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| Ready to drive her OWN go-cart!! YIKES!?! |
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| Racing with Ryker! |
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| Bungy Jumping |
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| 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!!
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!!
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!! :-)
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
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!!!
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!!
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!
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-809095Donations 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!
Sunday, June 4, 2017
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).
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).
Tuesday, May 23, 2017
FOURTH ANNUAL a cake 4 a cure Fundraiser
The fourth annual Dravet Syndrome Awareness Day is coming up soon - on June 23rd... in just ONE MONTH! That means my fourth annual "a cake 4 a cure" raffle / fundraiser is kicking off too!! Please visit the fundraising website to make a donation. I will keep track of all donations and entries into the drawing.
Donate here!! https://www.youcaring.com/dravetsyndromefoundation-809095
More details on the raffle can be found on this post below!
More details on the raffle can be found on this post below!
The donation site 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! In the past 3 years we've sent over $4,000 to the Dravet Syndrome Foundation!!
Last year's winner was Vicki Murra. Her cake will be in the works this year... I was busy during the time she wanted a cake last year so she is on my calendar!! I think it'll be something fun for her boys' birthday!! :-)
Please visit the fundraiser website to make a donation!!
**Now for the fine print...
1. I will only deliver to Luverne MN, Sioux Falls SD or Estelline SD areas or areas in between OR you may pick up the cake in Luverne. NOTE – If you live outside these areas, you may still donate but you will NOT be eligible for a cake... only cookies that I can ship.
2. The cake will be a 10" round cake (or equivalent). This would be a great sized cake for a birthday with 20-25 guests!
3. The cake will not exceed 12 hours to make – this eliminates some of my more extravagant cakes.
4. Cake must be “ordered” at least 4 weeks in advance. I will try to be available, although please understand that we get busy at times and may have travel planned. I would ask that you be flexible and maybe have another occasion in mind.
5. The donation website will close down at midnight on June 23rd and a winner will be announced on Luella's blog and the fundraising site on June 24th!!
If you'd like to follow Luella's Blog please visit: http://littleluella.blogspot.com/
If you'd like to learn more about Dravet Syndrome or the Dravet Syndrome Foundation, please visit: http://www.dravetfoundation.org/
To find out more about my little cake hobby, check out Embellished Sugar ! You can see some fun cakes and cookies I've made in the past http://www.embellishedsugar.com/
Thank you!!! I can't wait to announce this year's winner!!
Please share!!
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| Luella on the first Dravet Syndrome Awareness Day in 2014. June 23rd is all about her! |
Get your purple ready for June 23rd!
And as always... please share those purple pictures with us!!
Thursday, February 23, 2017
Seizure strikes again...
We've been having such a fun time counting Luella's seizure free days... today she made it to 174 days and that's where we stop this time. Shortly after reading "Silverlicious", saying bedtime prayers with Luella asking God once again to take her "seizures away forever", singing bedtime songs and hugs and kisses... she had a seizure.
Luella has had a cold. I thought she was getting a little better but was hit with some chest congestion and now a cough today. She didn't feel hot at bedtime but did have a fever of 101 after her seizure. Thankfully the seizure stopped all on its own tonight without any meds - not common for a bedtime seizure so we are thankful for that. She immediately went into her shivering - which she does after almost every seizure. I asked her if she was cold and she replied "Yeah" - another thing she doesn't often do after a seizure. I gave her some ibuprofen and hopefully she doesn't spike another fever during the night. I snuggled a bit then left her to sleep. Then I shed my tears.... I will have to tell her tomorrow that she had a seizure.
But... we are grateful for 174 days. That was the longest EVER! And we'll look forward to the next big long run and hopefully that starts tomorrow!
Luella has had a cold. I thought she was getting a little better but was hit with some chest congestion and now a cough today. She didn't feel hot at bedtime but did have a fever of 101 after her seizure. Thankfully the seizure stopped all on its own tonight without any meds - not common for a bedtime seizure so we are thankful for that. She immediately went into her shivering - which she does after almost every seizure. I asked her if she was cold and she replied "Yeah" - another thing she doesn't often do after a seizure. I gave her some ibuprofen and hopefully she doesn't spike another fever during the night. I snuggled a bit then left her to sleep. Then I shed my tears.... I will have to tell her tomorrow that she had a seizure.
But... we are grateful for 174 days. That was the longest EVER! And we'll look forward to the next big long run and hopefully that starts tomorrow!
Thursday, February 2, 2017
Celebrating 150
| On Monday, January 30th Luella celebrated 150 days of seizure freedom!!  | |
She has blown past her previous record of 122 days set last summer! We are SOO excited for her. Of course we had to celebrate a little bit... She requested pizza so when she got home from school she helped me make some yummy pizza. (She LOVES to help in the kitchen!)
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She also requested a cookie "cake"... basically a giant 14" chocolate chip and M&M cookie that I made and decorated for her! She was thrilled! SUGAR HIGH!??! (Thankfully she was smart and scraped most of the frosting off before eating.)
It's amazing to see her keep going everyday. She prays every night for God to "keep the seizures away forever".... I pray that too. I know that when that next seizure comes, she will just pick up and start the count again without missing a beat. She is so strong.
I have to say last Saturday when Jim suggested we go tubing as a family, I had a teeny tiny part of me inside that wanted to stay home and keep her safe and not risk a seizure. I knew I couldn't do that. She is enjoying life and all it has to offer and we want her to do all that she can! We went and we all had a terrific time! When the rest of us were tiring out, SHE was the one wanting to stay even longer!
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| Brave Luella ready to hit the hill! |
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| Luella having a great time tubing! |
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| Love family times like these! |
We feel so grateful for these last 153 days now, and look forward to each seizure-free day Luella is granted going forward! We pray for God's will and thank you all for your continued love and support, and most importantly, your prayers!
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