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
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!
