"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

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 will 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.