All about our Luella and her battle with seizures and Dravet Syndrome.
"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
There are a few different specific days to raise awareness for epilepsy during the year and tomorrow - March 26th is one of those days! It's PURPLE DAY for Epilepsy Awareness! Help us raise awareness and show support to Luella and 65 million people around the world!!
This is a great time to wear those Luella shirts... Luella is currently 245 days SEIZURE FREE!! On Saturday it'll be 250!! Record-breaking days - every. single. day! We are SO blessed and thankful for how well she is doing! Cheer her on!! Wear your purple and share a picture with us! If you'd like one of the newer "Team Luella" t-shirts I designed last summer, PLEASE let me know!! I have a few extra on hand and might have your size!! ($15 each)
Every day since January 20th Luella has been shattering records. Her previous record to beat was 180 days - January 20 was 181 days and on Friday, February 8th Luella celebrated 200 days of seizure freedom!! ...and she keeps going! We are so blessed to have had all this time. She's been able to do so many fun things.
Mermaid Girl
Luella had two weeks of swimming lessons during gym class at school in January. Swimming always makes me a little more cautious. I can remember all those times when just being in the water would trigger a seizure. She always seized at the pool. I'm just so thankful for the times she has now to enjoy the water! She loves it!! She's like a little mermaid in the water!
Our pool just got a rock climbing wall and Luella was excited to try it out! She must have climbed that thing a dozen times! (Video: https://youtu.be/TxU0gvEIxj0)
I've tried to not focus on the numbers so much as Luella was approaching her new record. I didn't want her to feel responsible or feel bad for not getting there if she were to have a seizure. We celebrated a little when she passed her previous record of 180 days... but I was keeping my eye on 200. I thought if she could make it to 200 we'd definitely have to celebrate! AND WE DID!
LONG hair!
On Thursday night (day 199) I asked Luella if she wanted me to color her color purple again. She had been wanting me to do it again since before Christmas but I said maybe after the new year. We got some pink hair color too and she decided to do purple at the top fading into pink at the bottom - and just a small section again like we did last time. And the really BIG news is that Ashlyn and I convinced her to CUT her hair too. In 9+ years I've only ever trimmed her hair - it was LONG, and getting hard to manage. She's had dreams of Rapunzel hair so getting her to agree to this was HUGE! I had been wanting her to try a shorter cut and she decided to cut 12 INCHES off!! We divided her hair into a couple of ponies and I cut them off! After a little trimming and evening out we figured there was "a foot and an inch" cut off - as Luella tells people!
Before and after - 12+ inches cut off! (It was wavy before from being in a braid.)
Waiting for the color to set!
I was a little concerned that Luella would be sad for cutting her hair after the fact. Looking at her after it was shorter, I said "I think you look older!!" Well, that made her grin and then she wondered if she looked 12, 13 or maybe 14? I said, well, maybe like 11!! Ha! She loves it and it's so easy for her to comb all by herself now too. Last night she even washed her hair mostly on her own!
The poster from her classmates and teacher.
On Friday - !!DAY 200!!, Luella and her siblings got a special breakfast (enjoyed leisurely, since school was 2 hours late) - French Toast in my Instant Pot! (I LOVE my Instant Pot - that could be a whole other blog!) Later in the day I took ice cream with a few topping options to school for Luella's class to enjoy for snack time! They all had fun helping her celebrate and even made her a fun poster!
During the day I worked on making Luella the celebration supper she requested - lasagna, corn and garlic bread! Grandma and Grandpa Johnson came over and we enjoyed a big supper and I surprised Luella with a quick little dessert - chocolate chip / M&M cookie dough bars! It was a fun night celebrating and thanking God for 200 days!
We are going to continue enjoying everyday we can get! We've had people ask us if maybe Luella has outgrown her seizures? Well, technically, since Luella's form of epilepsy is genetic and she has a gene that is mutated, it's not an epilepsy that one "outgrows", however, we also know that we serve a mighty God and all things are possible with God! If God decides to stop Luella's seizures then that's what happens! We will keep living by our faith and knowing that... in all things God works for the good of those who love him! (Romans 8:28)
A sweet treat for 200 days!
Our brave girl!
Purple to pink
Luella swam again today at a birthday party and her hair faded quite a bit. (I kind of forgot there was a swimming event coming up)... That's ok, we can do it again later sometime! She had fun sporting a shorter pony tail and is ready to donate the hair we cut!
Well, 2018 is history and Luella had some amazing moments during the year! First off, only TWO seizures in 2018. TWO!!! ONE, TWO. That's it!! One in June and one in July!! She set a seizure-free record of 180 days... which we are getting very close to once again - only 18 days away!
All those seizure-free days meant LOTS of normal days for Luella. Most people meeting Luella for the first time would not even guess what she has dealt with in the past. We are so grateful for her health and how well she is doing.
We weren't sure how things would go over Christmas. Luella, Ashlyn and I all got sick with the stomach flu on Christmas Eve. It lingered for several days until we all finally felt better and thankfully the guys in the house didn't get sick. Ashlyn had a fever with her illness so we were watching Luella very carefully. Thankfully she didn't have ANY seizures!
Luella at her first piano recital, Dec. 2018.
School is going well. Luella is learning cursive and loves to read! She was SO excited to start reading book one in the Harry Potter series over Christmas break! Harry Potter has become a new fascination with her and she's really into anything "Hufflepuff"!
During the beginning of December Luella played piano in her first recital. She did a great job and is moving right along in her books. She's getting ready to take swimming lessons again during Gym class at school in January. Swimming is also a favorite thing to do! It's hard to believe the school year is almost half done already! She is anxious for her birthday this year (in October) when she will be in "the double digits"! If she keeps growing like she is she might about pass me up this year too!
We thank you all for keeping Luella in your thoughts and prayers. We don't know how long we will continue down this path of minimal seizures and great days, but we put that into God's hands and trust that He has an amazing plan for Luella! Happy 2019 and may you have many blessings in the new year!
I'm not quite sure how I let FOUR months go by without a post! I guess life got busy... So the last post ended Luella's super long seizure-free streak of 180 days. She did have another seizure about a month later on July 23. We were on vacation and she had a seizure just after falling asleep... this time NO fever though. We haven't seen a seizure without a fever for quite a long time. We figured it was due to poor sleep over the previous 5 nights while on vacation... to bed late, up early. She hasn't had one since so we are at 102 days!
We are SO SO fortunate that she is doing so well! She is really thriving. She started THIRD grade in September and tuned NINE last month! She is doing great at school. She is pretty much in the typical classroom all the time. She can check in with her special education teacher if needed but for the most part she is getting her work done in the classroom with her peers. She's a smart little lady - reading at grade level, loves math, learning cursive writing... everything a typical third-grader should be doing!
At the beginning of every school year I stop by all the sections of Luella's grade and visit with the kids about epilepsy and seizures. Most of the kids have heard the same thing for four years now but there are always new students along the way and it's a good refresher for all the kids. I've read them books in the past about epilepsy but they didn't always apply to Luella 100%. This year I made my own Shutterfly book about Luella and took it to read to the kids. They LOVED it! It was fun to showcase photos of Luella and how epilepsy specifically affects her. We always have a question time at the end and as the kids have gotten older I've been so impressed by the questions they have asked. It's great helping them learn and bringing more awareness to epilepsy!! Which brings me to the fact that November is Epilepsy Awareness Month!!
If you feel inclined to wear some purple this month to spread awareness for epilepsy, we'd love for you to share a photo - email me or tag me on facebook!
Also, I do still have a few (various sizes) of the newer "Team Luella" shirts I designed this summer. If you'd like one, let me know!!
The birthday girl!! NINE already!!
If you'd like to read the Luella's epilepsy book yourself, I've shared it on Google Photos -
I put this together very quickly so there are a few typos and if I print it again, I'd change a few things.... but I think it's a cute book and I hope you like it... maybe you'll learn something new too!
We are SO SO fortunate that she is doing so well! She is really thriving. She started THIRD grade in September and tuned NINE last month! She is doing great at school. She is pretty much in the typical classroom all the time. She can check in with her special education teacher if needed but for the most part she is getting her work done in the classroom with her peers. She's a smart little lady - reading at grade level, loves math, learning cursive writing... everything a typical third-grader should be doing!
If you feel inclined to wear some purple this month to spread awareness for epilepsy, we'd love for you to share a photo - email me or tag me on facebook!
