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

Purple November ... and many updates.

How did I let it get to be November 13th before I wrote about Epilepsy Awareness Month?! By now you should all know the drill.... November is Epilepsy Awareness Month and purple is the color. We love to see everyone wearing purple during the month and supporting 65 million people around the world who are living with epilepsy, especially one exceptionally cute little one living with us! If you do wear purple sometime this month - send me a picture! And thanks for the support!

In other news Luella is currently at 72 days seizure free!! Praising God for all those wonderful days and fun times had without seizures! Luella's leg continues to heal well. She had a follow up with her orthopedic doctor and everything looks great. We are officially done with the wheelchair and walker! Luella was so glad to finally ride her bike again and super excited to get to ride the bus for the first time this school year!

     

We also just recently had an appointment with Luella's neurologist in St. Paul. Dr. Wical was SO thrilled with how well Luella is doing. Luella is for sure beating the Dravet odds and we are so thankful and pray that she will continue on this path! We were sad to find out that Luella's beloved doctor will not be seeing patients anymore. Dr. Wical has helped us during some of Luella's most troubling times and we will miss her so much! We were lucky to snap a quick picture of Luella with Dr. Wical before we said our good-byes. We got some great referral options from Dr. Wical and we will continue to take Luella to Gillette Children's.

Luella and Dr. Wical

While at Gillette Children's we also checked in with a pediatric orthopedic doctor that Luella saw about three years ago. Children with Dravet syndrome often times develop gait issues and sometimes are wheelchair bound. We knew from our earlier consult with this doctor that Luella already had the extremely loose joints common in Dravet. We wanted to check in with him again after the growth plate fracture and also to check out Luella's knees which look to be more "knock knee'd" lately. He did verify that yes, her legs and hips are extremely flexible - much like how we are born. Over time as kids get older those ligaments tighten and we aren't as flexible. Luella is still very loose like a newborn and she has a bigger range of motion in her knees and hips. Right now there isn't much we can do. Just keep an eye on things and make sure she remains active - not a problem there!! We'll see him again in two years. 

Look at that cute little missing tooth spot!! 

One last SUPER EXCITING bit of news from our visit to St. Paul was that Luella LITERALLY lost her first tooth!! I was talking with her after supper and there was a gap in her bottom teeth!! We have no idea where that tooth ended up!! I didn't even know it was loose!! When I checked it out I was surprised to see that she had a permanent tooth already coming in just behind where that tooth was! AND the tooth next to it was very loose too!! I guess I need to pay more attention to her teeth!

Luella worked on that 2nd loose tooth all night. The next morning it was SO loose. I told her she needed to pull it out before we LOST that one too. I gave it a little tug but she didn't like that so I told her to try really hard. She grabbed a kleenex and pulled and says, "Here's my tooth!" She was so proud! When we got home on Wednesday night she couldn't wait to get her little tooth pouch - never used before, and carefully tuck her tooth inside. That sweet Tooth Fairy left her TWO golden dollar coins to make up for the other tooth that was lost. 

There are TWO missing tooth spots!! ... and a cute little Rainbow Dash hoodie PJ wearing girl!! 

Don't forget to wear some purple this month!!