"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, December 14, 2015

She got a new bed!!

There was some super exciting things happening in Luella's world over the weekend!! She FINALLY graduated out of her "crib bed" into a "big girl bed"!! She has been telling me for some time that she really needed a new bed. :-) Things were getting a bit "snug" for her in the toddler bed! Actually it was only February when I finally removed the side of the crib to turn it into a toddler bed. I guess that was my over-protectiveness in action!! On Thursday I was able to pick up a new bed in secret and got it all set up with a new headboard and everything on Friday. Friday after supper was the big reveal and she was SOOO excited! You have to watch the video (scroll down) ... it'll put a smile on your face, I promise!

The BEFORE bed!! This was just in February when I finally turned the crib into a toddler bed for Luella! 

The new twin "big girl bed"!! She LOVES it!

First night getting ready for bed in her newly arranged room!

Excited to get all tucked in!

Maybe a little too excited to sleep??

Lights out and cozy!!

Link to YouTube video: https://youtu.be/ZNAOdEy0JBQ

Monday, December 7, 2015

Code Purple

Well, I'm sad to say Luella's seizure-free stretch ended today... We enjoyed just over TEN WEEKS of seizure freedom. 73 DAYS! "Code Purple" was called as Luella had a seizure during gym class. I got the call just before 10:30 this morning. I got there quickly and the seizure had just stopped after one dose of her rescue med. Once again everyone did everything like clockwork. This was Luella's first seizure at school this school year. Luella's para is an absolute angel and we thank her, the school nurse, her gym teacher and all the other staff at the school for doing everything just as they are supposed to. It's really nerve-wracking and a little scary dealing with a seizure especially for the first time but Luella's para did a great job! Luella's classmates were all concerned about Luella. I hope to be able to send them a little message from Luella later today when she is awake and feeling better. She's taking a nice long nap right now....

Luella sleeping off her seizure and meds today...
Thank you for your prayers to get Luella this far!! We hope to reset the clock today and make it OVER 10 weeks next time!

Friday, November 20, 2015

Celebrating 8 weeks... with SNOW!

Luella has made it EIGHT WEEKS (57 days!!) SEIZURE FREE!! This is HUGE!! Let me give you some stats.... We have to go back over THREE and a HALF years before we find a seizure free stretch that was longer. She has only had two stretches that were longer - one was 90 days and the other was 74 days... and those were times when Luella was taking high doses of her meds and was basically not Luella. I don't even know if I would count those times as successes. Seeing her like she is today.... Living life and enjoying every day is such a gift from God! To have 57 days uninterrupted by a seizure is amazing. We thank you all for your continued prayers, helping Luella to get to this milestone!

We got to celebrate today with SNOW!! Our first snow of the year started this morning and by the time school got done it was time to start shoveling! All the kids had fun "helping" me clear the driveway. Luella LOVES the snow. Three and a half years ago when Luella was in the midst of that longer stretch we took her outside to play in the snow and she just stood there. She wasn't playing or doing any of the things she should have been doing. It was a blessing to see her having so much fun outside today. I was getting SO cold so after an hour I bribed her in with some hot chocolate!!

We will continue to pray for more and more days / weeks / months to add to this seizure free run and ultimately we would love to have a cure for Luella. November is Epilepsy Awareness month so keep on helping us fight for that cure!! Wear your purple! And share a picture. :-)

Tuesday, November 3, 2015

Luella says "Wear Purple"!

Luella is showing you how to wear purple!
November is Epilepsy Awareness month!! If you have something purple, please wear it and share a picture with us! I try to put together a little "purple video" at the end of each year showcasing all of our purple supporters - so send me your purple pictures!! We love to see all the purple out there. So many friends were already wearing purple at church on November 1st! Thank you!! Luella loves to see your purple! If you get a chance to let others know why you are wearing purple that would be awesome. Check out the epilepsy statistics below! In addition to those stats.... 1 in 10 people will have a seizure at some point in their lifetime!

And BONUS news...?? Luella is getting very close to SIX weeks seizure free!! Thank you God! Loving every minute of it!

Epilepsy statistics from TheEpilepsyNetwork (TEN).

This is the lawn sign that is in our yard this month!!

Bonus points if you share a picture of yourself with a PURPLE rake!! :-)
Luella was SO excited to find a purple rake to help clean up the leaves!

Monday, October 26, 2015

She is SIX!

Luella has been SO excited for her sixth birthday and it finally happened on Wednesday! Turning six called for several celebrations!
We were able to go back to my family's farm in South Dakota on the 16th. The kids were excited to ride in the combine with grandpa and we had a little birthday celebration there with my family. Her birthday was Wednesday and I think everyone who Luella saw heard all about her turning six! I brought special birthday donuts to her classroom and Luella was so excited to share them. On Wednesday night she opened presents from us and Grandpa and Grandma Johnson, then we celebrated with pizza at Pizza Ranch. The real big fun happened on Saturday when Luella had a party with all of her friends... eleven of them! The theme was Tangled / Rapunzel and Luella had a terrific time!! I was concerned that a seizure might disrupt her day since she is right at the one month mark and is "due" for one. We are so thankful for all the extra prayers to get her through the day. It was so much fun to see her enjoying herself! This was her first "friend" party and her friends treated her royally! I wanted this birthday to be one that she always remembers and I think we made that happen. Now she's already talking about turning seven...

A few party pictures are below. More party pictures can be viewed here: https://goo.gl/photos/98WGduvbm3Jo5Kj68

Our very own Rapunzel!

It was a picture perfect day!

Luella and all her princess friends!

Birthday party fun!

Rapunzel cupcakes in Estelline for an early birthday celebration.

Birthday donuts at school!

Wednesday, October 7, 2015

NFL... Will you support Epilepsy Awareness? Sign the Petition!

There is a Change.org petition requesting the NFL to support Epilepsy Awareness in November. Please sign the petition. Here's what Change.org says...

Epilepsy Awareness is a wonderful and inspirational cause for the NFL to take up and we are reaching out to the NFL, NFL Teams and their sponsors asking them to support Epilepsy Awareness during the month of November and every November!

We ask that NFL games would feature players, coaches and referees wearing purple game apparel, as well as additional on-field and in-stadium messages, all to help raise awareness for this very important campaign, it would mean more than they could even imagine. Most of the apparel worn at games by players and coaches, along with special game balls and purple coins could be auctioned off at NFL Auction, with proceeds benefiting fantastic Epilepsy Organizations around the country and the world!

3 million Americans have been diagnosed with epilepsy and the numbers keep growing by the day, month and year! Of the millions of Americans in this country, some either have epilepsy, a family member has epilepsy or they know someone with epilepsy! We want to raise awareness in a BIG way on their behalf! 

It would make a monumental difference for so many nationwide and even worldwide!

This would only be the tip of the iceberg of what could be done if the NFL would just say "YES!" to our campaign for awareness for those living with Epilepsy.

NFL, ‪#‎DoTheRightThing‬!

Sign the petition here:

Sunday, October 4, 2015

She is showing us all!

Well, lately Luella has really been showing us all just how strong and determined she is! Today, this little lady is riding a BICYCLE WITHOUT TRAINING WHEELS! Wow!! If you had asked me during that first year or two when she was having many, many seizures if I thought she'd ever ride a bicycle I probably would have said, "I doubt it." But Luella had other plans and this past week that plan was to master riding a bicycle and she has it about perfected! Thank you Lord for gifts like these!

Video on YouTube of Luella riding a bike: https://youtu.be/TuByQ-Tpv-U

In other news, we had an IEP meeting at school last week to review some new resent testing that Luella had done after school started. She is THRIVING at school!! She has tested out of DAPE (Developmentally Adapted Physcial Education)! She has met all her goals and is right in line with what her peers are doing!! So amazing! She will still be doing OT and Speech but doesn't haven't far to go before she will met those goals as well! When school first started she was in the Special Education room for 30 minutes every day. Well, they are running out of things to work on in there! She is getting most of her work done right in the classroom so her Special Ed time will be reduced to only 20 minutes just three days a week!! How amazing is that?!? We feel SO blessed at the progress Luella has made and continues to make. She is just amazing us all by what she is accomplishing! School has been such a great thing for her and she loves it!

I tried to work with Luella all summer to write her name in title case. She fought me and just wanted to write it all caps. During the first month of school she went from writing her name like this... to this! 

And her coloring has improved from this... to this! 

We are SO grateful for the dedicated people who spend time with Luella during that day and have helped her grow so much during the first six weeks of school!

Thankfully Luella hasn't had any seizures at school although she continues to have about a seizure a month. Her last seizure was September 25th, the one before that was August 26th. We focus on the positive in that these seizures are now about every four weeks verses one a week about a year ago and almost daily back in the summer of 2011, and also that she is still showing Dravet syndrome who is boss by bouncing back so quickly and LEARNING TO RIDE A BICYCLE!!! WOOHOO!! 

Wednesday, September 16, 2015

A Make-A-Wish "Beauty" - Helping to celebrate 5,000 likes!

Just a quick post to show you the "beauty" that was all over the Make-A-Wish Minnesota's facebook page today! If you are on facebook, you've probably already seen my shares but I just had to share with those who might not see it there. I was surprised when scrolling through my facebook news feed this morning to see a beautiful little smile looking back at me! Luella helped them celebrate 5,000 facebook likes today! She was on an image on their timeline and also on their cover photo!! Thanks to the talented Jim Juhl at Myhre Studio for capturing this and other beautiful pictures of Luella!

Visit Make-A-Wish Minnesota's facebook page and give them a "like"!! They do amazing things and we are so grateful for the memories they gave our family!

Sunday, August 30, 2015

Water, water and more water!

A happy girl at WWW!
Well, it's the end of a SUPER fun weekend!! Luella set a record by being able to go to Wild Water West (a water park near us) for the first time and not have a seizure!! We've tried to go there every summer and it always ended the same way - with a seizure. Not Saturday! Luella had a fantastic time!! We all did. We started out riding the go-karts as it was a bit chilly yet to swim. Luella had a blast riding with daddy. Then we went on to swim and she did great! We spent over four hours there and Luella did it ALL - water slides, kiddie pool, wave pool, lazy river, go-karts, bumper boats and mini golf to finish it off! We were thanking God for such a wonderful time. YAY!! We celebrated with supper at Buffalo Wild Wings! That was a first too - can you believe it!? ;-)

Then Sunday.... we decide to hit the water again by going to our local "Creamery Pond". The kids had a blast and Luella had another terrific day! She spent time playing in the sand, riding the paddle boat, and swimming! After a good couple hours there we grabbed some ice cream and headed home to build up the fire pit and roast some hot dogs and make s'mores! It doesn't get much better than that! What a perfect weekend!! We thank you all for keeping Luella in your prayers. We know so many said some extra prayers after her seizure on Wednesday night. God bless you!!

She made a number "4" in the sand!

More pictures from the weekend....

Racing with daddy.

Going down the big water slide with daddy.

Bumper boats with mommy.

Playing mini golf.

Swimming with daddy!
Luella has a great daddy to take her in that cold water!!
Mommy was a bit too chilly!

Paddle boat fun.

Old Luverne fire truck near the pond.

Time for s'mores.

Saturday, August 29, 2015

Kindergarten! (and a seizure)

Luella just completed her first week of kindergarten!! How amazing is that?! On Monday she went to school with mommy for a quick one hour orientation. She had a little time with her teacher and some time playing on the playground. Tuesday was the first full day - 8:00 - 3:15. A LONG day! Daddy took her to school but she got to ride the bus home - the "real" school bus with her friends and siblings!! Our school has been so terrific about making sure Luella has the most typical school experience. Luella has a one-on-one paraprofessional with her during the day at school and she also rides the bus with Luella! It's so fun to see her running to the bus in the morning and precious to see her in the afternoon - getting off and running to me for a big hug!

Riding the BUS!!

Reading a story about epilepsy to Luella's class.
Luella didn't seem to be too tired out on Tuesday after school and she continued to play hard outside after getting home. Wednesday she was a bit more tired and a little whiny at school. I stopped in to Luella's classroom on Wednesday morning to read a book about epilepsy / seizures to the kids. Luella tried to push me out of the room! She didn't want me there! :-) She let me stay to read but I had to make sure to leave right away when I was done! She is SO independent! The kids were all very attentive to the story. I read the book Taking Seizures Disorders to School by Kim Gosselin. It is a great book to help explain seizures to younger kids. The main character in the book is Jaime but I modified the story to make it about Luella. The kids were good listeners and answered all the questions I asked after the story. I pray they don't have to see Luella having a seizure but if they do I hope the time we spent talking about seizures will have them more prepared.

After school on Wednesday I could tell Luella was more tired but she continued to play and we tried to get to bed a little earlier. She rustled around quite a bit before she finally fell asleep and then just a few minutes after falling asleep her alarm began to sound. I knew she was having a seizure. Jim and I quickly sprang into action. It's sad that this has gotten so routine for us that we barely need to speak to each other during everything... we just do what we need to do. Sadly we needed to give her three doses of midazolam again before the seizure finally stopped. This seizure was almost identical to her last seizure on July 30th. So it had been 27 days since the last one. My initial reaction was - well, two full days of school wore her out and now she is having a seizure. Jim was more optimistic and pointed out that it had been 27 days and was getting to the point when we would begin to expect her to have one. So hopefully that was all it was and school didn't play any part. We would appreciate prayers for Luella to have the best year of kindergarten without interruptions from seizures!

Everything at school is in place for her to have the best year! Before school started we trained all of the people who will be with Luella at school. She has an amazing kindergarten teacher and paraprofessional along with many other teachers and paras who will work with her throughout the day! We are so fortunate that Luella has such a great team! The majority of the day Luella will be with the rest of her class in a typical kindergarten classroom. She will spend about 30 minutes a day with her special education teacher and will also go to speech, OT and DAPE (developmental adapted physical education) at various times during the week too.

Luella and her kindergarten teacher Mrs. Dreessen. Luella and her 1:1 para Mrs. Kneip.

Luella's special headband for gym.
During the summer I was looking for a something to help protect Luella's head when she is at gym. She has gym class everyday and seizures are more likely when she is running around and playing hard. The gym floor is hard and it would be difficult for a para to be close enough to catch her in the event of a seizure there. I was happy to find the Crasche Middie headband. It is designed for figure skaters but works perfectly for Luella. It's cute and not as obvious and restrictive as a full helmet. Thankfully she is receptive to wearing it!

Remembering back to just over four years ago when we got Luella's Dravet syndrome diagnosis... I remember googling "dravet" and feeling just devastated... reading the stories about severely disabled children with Dravet. Kids who couldn't walk or talk. Kids who had feeding tubes. Kids who had hundreds of seizures a week (or more). I wasn't sure what Luella's future would be like. It was hard to not think of the worst case scenario but whatever Luella's future held, I knew God would be with us. We are SO blessed by how well Luella is doing!! Everyday I'm reminded of how different things could be - we know many other children with Dravet who aren't doing as well. We also know that things could change in an instant - any seizure could change everything, but we are so thankful to God for giving Luella the opportunities that she has!

Here are a few more pictures of Luella's first week of school!

Luella's cubby with a PURPLE crayon name tag!!

There are lots of fun play things in kindergarten.

Luella's spot at the table.

Ready for her first FULL day of school!


The whole crew ready for school!! This mama is lonely during the day!

Saturday, August 15, 2015

558 Miles

558 miles (one way) is the number of miles traveled by Luella's very special friend to get all the way to our house. Well, she is not JUST Luella's friend... she is very special to our whole family!! You might remember past posts about the organization "IR4" (I Run For). IR4 matches runners with buddies who have medical issues or special needs. The runners dedicate their miles to their buddies. We were fortunate to have Luella matched with a wonderful lady from Illinois named Sue! Sue has been such a blessing to us! Sue and Luella were matched in January 2014. Sue runs, walks, bikes and most importantly prays for Luella! Since they were matched over a year and half ago, Sue has said she wanted to find a time to come and visit us. (Find my post about getting matched with Sue here - http://littleluella.blogspot.com/2014/02/long-overdue-updates-seizures-school.html)

The board we used to track Sue's miles.
We had been keeping track of all of Sue's miles on a fun board we made. In June Sue completed 558 miles - running, walking and biking for Luella! Since her virtual journey to our house was done, it was time to do the real thing (driving of course!).

On Thursday, August 6th, Sue and her husband Jim got up super early to begin their trek to Luverne to meet Luella! They weren't sure how late they would be getting to Luverne so we planned to meet for the first time on Friday. As it turns out they made great time and were in town in time to join the kids and me for the Bank Night movie "Home" at our Historic Palace Theater on Thursday night! I saw them as soon as I found a parking spot and Luella wasted no time unbuckling and getting out of the van to greet Sue! It was SOOO sweet!! She was so excited to finally meet her "running buddy"!!

(Video of Luella meeting Sue for the first time - https://youtu.be/w5huYBC3AjM)

It was a fun movie to watch together but it was probably more fun to listen to Luella laughing throughout  the movie! It was pretty cute!

On Saturday Sue and Jim spent the day with us. There were many gifts bestowed on all the kids from them! Wow, did they get spoiled! Luella had fun showing Sue around our house and they played and played!

(Video of Luella and Sue playing a fishing game. Warning: LOTS of giggles here! - https://youtu.be/__eG7txmUec)

The day went by so fast! We visited, checked out some of the shops downtown, took a drive to see some of our great Blue Mounds State Park. We finished the evening with some homemade pizza and s'mores cupcakes. It wasn't over yet though. Sue wanted to give Luella her birthday present a little early so she could see her open it in person... Luella received the most gorgeous purple dress up gown - just like Rapunzel!! She loved it and wanted to sleep in it that night!! It was such a whirlwind day! So much love and happiness.... and a few tears as we said our goodbyes. Luella didn't understand the sadness but Sue and I did. Hard to say goodbye when you don't know when you'll meet again! Thank goodness for the internet and being able to stay connect... even though 558 miles separate us! 

Thank you Sue for your love and caring!! We are blessed by your friendship! 

Here are a few other pictures from our fun day! 

After the movie - Sue with the kids and me.
Loving having Jim and Sue visit us in Luverne!
The kids getting lots of goodies! 
SO MANY things!! 
Luella enjoyed having Jim and Sue play her fishing game with her.
Of course Luella had to play a little piano.
The beautiful early birthday present Luella got from Sue and Jim! Such a beautiful princess!
Luella and Sue! I love how Luella is holding Sue's necklace - one we gave her last year that
says "I Pray 4 Luella".
This is the last picture Sue took of Luella - standing in the window waving goodbye.
Sue posted on facebook with the caption
"Saying goodbye to a princess is very hard."
We'll miss you Sue!!