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!

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!)

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!

Brave Luella ready to hit the hill!

Luella having a great time tubing!

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!

Luella's Flight to the North Pole

Luella got to take part in a very special experience on Wednesday. Make-A-Wish Minnesota sent Luella an invitation to take part in Sun Country Airlines "Flight to the North Pole". She's been invited every year since her Wish trip but we just haven't been able to make it work. This year I wanted to make sure to make it and fortunately the weather cooperated and Luella and I made the drive up to Minneapolis on Wednesday. It was a LONG day - driving up to the cities, taking a little time to shop at Ikea (that part was for me), then on to park and get on the bus to head to the airport!

We got off the bus and headed to ticketing to get our tickets to the "North Pole". Luella knows we didn't really go to the North Pole, but it was fun no matter what! Everywhere we went we were greeted by "elves" and so much festivity! We got our tickets and headed to the gate. Up at the gate area there were of course more elves but also lots of team mascots and fun! Soon it was time to board. The plane was all decked out and the flight attendants were dressed as elves too. The kids shut their window shades and the plane "took off"! The pilot revved the engines and taxied around while everyone was served supper on the plane. When we "arrived" we had to wait a bit for Santa to signal that he was ready for the kids. Then it was time to get off the plane and visit Santa!

We got off the plane a few gates down from where we boarded. They had transformed the area into a fun place to meet with Santa. Luella was so excited to meet Santa and tell him what she wanted for Christmas. Santa took a few minutes to meet with each of the almost 70 kids there. When it was Luella's turn she made sure to tell Santa she wanted a scooter for Christmas. Then Santa gave her a little early gift to take home - a little stuffed Cambri toy and a Sun Country airport playset! Luella also got a special Rudolph balloon hat! Luella wasn't sure if this was going to be the "real" Santa but after he greeted her with a "Ho, Ho, Ho" she told me she knew it was the real Santa!

There wasn't a "return" trip from the North Pole so I was glad Luella understood it was a pretend trip. I heard a few kids say "but don't we need to fly home?" ;-) Soon it was time to get back on the bus to head back to the parking garage! We stopped for gas and Luella changed into PJs for the ride home. It was about 9:15 when we got on the road! Thankfully Luella was out within about 30 minutes... despite all the cookies and candy they filled her up with! I was thankful for good driving conditions and a list of podcasts to keep me awake for the drive home. Luella slept the entire way home and we pulled in the driveway at 12:30!

It was such a fun and magical night for Luella. I'm so glad we had this opportunity. Make-A-Wish Minnesota and Sun Country Airlines did an amazing job making sure all the kids had a terrific time!

You'll have to view the video slideshow to see all the fun!! https://youtu.be/pqLAZZ3es8g

Giving Tuesday

Today is Giving Tuesday - a movement to create an international day of giving at the beginning of the Christmas and holiday season. We are passionate about raising funds for the Dravet Syndrome Foundation and their work to find a cure. If you are wondering where to share your gift today please consider DSF. You can donate here: https://app.etapestry.com/onlineforms/DravetSyndromeFoundation/onlinecontributions.html

I'm sure you are all aware of all Luella has been through but here's a little reminder. This short video represents only a handful of the experiences we've had with Dravet syndrome. And this would be only a small fraction of what some kids have to deal with. Through it all we consider ourselves quite fortunate but we just don't know what Luella's future holds. We need a cure. So many others need a cure. Thanks for taking a minute to read this, watch the video and consider a donation. God bless you!

https://youtu.be/_v_1Gev04lc