"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, December 16, 2016

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


Tuesday, November 29, 2016

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!

Sunday, November 13, 2016

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!!

Sunday, October 23, 2016

She's SEVEN !

We just wrapped up an amazing week celebrating our amazing Little Luella! It's hard to believe she is SEVEN!! She's actually not so "little" anymore! <sniff, sniff>

On Sunday - October 16th, Luella celebrated her birthday with her friends and a fun swimming party! The girls made a special beaded bracelet with a pretty silver sea charm to take home. We had strawberry cake with cream cheese frosting at the request of the birthday girl! Luella got many fun gifts. It was a super fun party topped off with about an hour of swimming! (Seizure-FREE swimming!!) Luella also got to bring a special treat to school on Wednesday (since there wasn't school Thurs or Fri). Then a trip to the farm to celebrate on Thursday and finally on Friday, October 21st - her ACTUAL birthday... supper at Pizza Ranch and then off to see the firemen's movie "The BFG"! Oh and the firemen let her climb up and honk the horn on the fire truck too!! It was an amazing week celebrating our amazing Luella!!

Luella has been on a roll again with seizure-free days.... we are currently counting at 52 days!! She is also doing great and walking all over the place without even using a walker anymore! We'll be checking in with her orthopedic doctor on Monday but we anticipate hearing that everything is healing up great. Hopefully getting to ride the bus to/from school again will be on the agenda this week too!!

I'll leave you with a few birthday week pictures... More pictures can be seen online here: https://goo.gl/photos/8rimWY1M5fvDF38H9


The little mermaid herself!

Having fun swimming!

A cozy mermaid blanket from mommy and daddy!

A birthday funfetti donut for breakfast!

She's SEVEN!!

Thursday, September 29, 2016

Luella: The Speech and OT Graduate

We had Luella's IEP meeting on Tuesday and it went SO well!! Luella graduated from Speech and OT!! There's just no need to continue with the therapies since she is doing it all!! Another big highlight is that she will not be visiting her special education teacher as much. She was going 3 times a week for 20 minutes and that has been cut back to one 20 minute session a MONTH! Luella is getting all her work done in the classroom right along side her peers so there just wasn't a need to have that extra time to work on things. We couldn't be more thrilled with all the progress Luella has made. She is doing amazing things and we pray that she can continue on down this path.

The team at school said that if at anytime we feel like she needs some extra help again... they are just right there, willing to step in! We are so fortunate to be in such an amazing school district. I've said it before, but so many parents dread those IEP meetings, feeling they need to fight for the things their child needs, but we have never been in that situation. Everyone cares so deeply about Luella and her success! Blessed!!

It was party day for Luella today!! Celebrating the end of Speech and OT! Awesome Job Luella!!


Wednesday, September 21, 2016

That Cast is OFF!! Wheelchair / Walker will be sticking around...

Luella was SOOO excited to get her cast OFF today!! She tolerated that cast much better than I would have these last 5 weeks! It was great that she only had to have it for 5 weeks and not the 6-8 they originally told us. Unfortunately riding bike and running around with friends will still have to wait another month or so. She'll continue to use her wheelchair and walker as she gradually transitions to bearing weight on that leg. She did not need to have a brace or anything on her leg! Her doctor said that kids typically heal much faster than adults and, while her leg isn't completely healed, having more range of movement and gradually bearing weight will allow her to heal up over the next several weeks. Her x-rays today looked great! She will go back to the doctor on October 24th for follow-up x-rays and we hope she will be walking completely on her own by then!

Luella's cast was so beautifully decorated. She did some doodling (as did I) and when school started she brought a baggie of permanent markers for her friends to draw pictures or write their name. We had to take some pictures of her cast this morning to remember all those fun doodlings!



Getting her cast off was a breeze! The lady that took her cast off said she's had 12 year olds crying while getting it cut off, but Luella was super brave and did great!!

Ear protection from the loud saw... actually it wasn't that loud... I think more so the kids don't get worried. Maybe I should have been the one wearing them!! I was WAY more nervous than Luella was!

Starting to cut.

Working through the layers.

FREEDOM!!


Luella is looking forward to a nice long bath tonight!!! :-)

Saturday, September 3, 2016

Bedtime Seizure

As you tuck your little one into bed you shouldn't have to worry about a seizure gripping their little body and taking their breath away. You shouldn't have to listen to that same little one moments earlier praying to God to keep her safe and to take her seizures away. We are not guaranteed a perfect life in this lifetime... free from the pains of the world. Only when we are with our Father in Heaven can we be free of these worries and fears and all we can do in the meantime is just trust that God's will be done.

Therefore do not throw away your confidence, which has a great reward. For you have need of endurance, so that when you have done the WILL OF GOD you may receive what is promised. 

                                                             Hebrews 10:35-36

Last night literally just minutes after I left Luella's room, a nasty seizure gripped her and took her breath away. I prayed and just rubbed and rubbed her chest and back to stimulate a breath. Thankfully she did take a breath but she was struggling and the seizure wasn't stopping. We put the oxygen on her and after 2 doses of midazolam the seizure finally did stop. After several more minutes her breathing returned to normal and she slept the rest of the night peacefully.

This morning Jim got Luella up and ready for the day while I got ready. I asked him if he told her about the seizure. He hadn't. She was perky, happy, and anxious for the day. She didn't know about the scary seizure. We decided not to tell her. She has already started worrying about seizures herself... sometimes wanting us to be with her while she's brushing her teeth or just a room away... saying "but what if I have a seizure?" We assure her that we are always close enough to hear her and are still keeping a close eye on her. We don't want her to fear going to sleep at night. Some kids are scared of the dark, Luella isn't. No kid should have to be scared of a seizure after falling asleep.

It's been just over 2 weeks since her last seizure - the night she got her cast. We are praying this pattern won't continue and we can once again enjoy longer seizure-free stretches, especially as school is starting in just a couple days. This little lady is going to be in 1st grade!! Please pray for a great year of school and fewer seizures. Love and thanks to you all!