Seizure to end 2017

Well, as much we hoped to avoid a seizure with the fever Luella had on New Year's Eve, it just wasn't meant to be. I did put a quick update on Facebook, so you may have already heard. Luella did have a seizure just before 5 pm on Sunday. At bedtime her temp was more normal and she slept fine. This morning (Monday) she woke up with a normal temp. As the day went on her temp went up. Thankfully she hasn't had another seizure but she won't be heading back to school tomorrow. Not sure what's going on with her. She doesn't seem to have a cold although today she have a bit of a stuffy nose.

We appreciate all the messages and prayers. Hopefully she can get through this quickly.

I had hoped to make it to a new seizure-free record on the 14th.... After hearing Luella feeling a little sad about starting the count over, I decided to stop counting. At least not letting HER know the number. I don't want to put any pressure on her for something she has no control over. If she happens to hit a record, we'll celebrate THAT day. She asked me the other day if other kids with epilepsy have more seizures than she has and I said, yes, she is really quite lucky... We know so many other warriors who battle this daily! We are so grateful for how well Luella is doing! We'll take whatever happens and keep on going!! 

Luella got to celebrate a little on New Year's Eve even while battling a fever. 

Please be in prayer

We hoped to close out this year with only three seizures for the entire year... however as Luella is currently battling some bug and her temperature keeps rising, it's looking like we may end up dealing with a seizure today. We had hoped to get to January 14th and have a new record of 175 days!! I know with prayer that can still be possible!! She currently has a temp of 102. Please pray we can get through this illness without a seizure. Thank you and Happy New Year!!

An Update... 2nd Grade and 8 years old!

This is a LONG overdue post!! I can't believe I haven't even posted since before school started!! Just a quick note that she is currently 116 days seizure-free!!! Now if you want to read the long details below, feel free...

Luella starting the 2nd Grade!

Luella started 2nd grade in September and is doing SO well!!
She has had a few bumps in the road as far as following directions and staying on-task in the classroom. If you recall, last year she basically didn't visit the special ed room at all by the end of the school year. The special ed teacher checked in on her in the classroom from time-to-time, but basically she was with her peers the whole day. In 2nd grade, more independent work is expected and Luella's attention skills are lacking a bit. In her best interest, she is visiting the special ed room twice a week now for 20 minutes each time to catch up on any work she might have but mostly working on her attention skills and following her teacher better. She is working on it! We'd like to avoid adding meds to help her focus so we are hoping things will only improve.

Luella has a new paraprofessional working with her this year and she is another tremendous lady and we couldn't be happier! Her para from last year still is riding the bus with Luella so she is happy to see her some during the day too. We are so fortunate to be in the school district we are and have the support available that Luella requires!

At the end of September Luella had her yearly neurology appointment at Gillette Children's. This time we didn't get to the beloved Dr. Wical. Last year we knew Dr. Wical would be retiring so we took her referral and set up an appointment with Dr. Williams. We were happy to visit with Dr. Williams and of course she was thrilled with how well Luella is doing! Luella will be visiting Gillette again in January for another neuropsychology visit and testing. It will be a LONG day with 6 hours of testing!

In October our "Little Luella" turned EIGHT!! I don't care how old or big she gets, she will always be our "Little Luella"! It's hard to believe she is already 8 though... I'm not sure how that time went by so fast! Luella celebrated her birthday with an 😆😍 EMOJI-themed 😊😄 party with many of her classmates and friends. She choose to go bowling so that was a pretty crazy and fun time with FOURTEEN 7-8 year old girls!! Of course she had a VERY specific idea of what her cake should look like. We sat down and I sketched it out as she described what she wanted. I got to work and she was pretty happy with the end result! 😍 Two tiers... the top funfetti and the bottom marble. LOTS of emojis and FUN!

And now it's already NOVEMBER!! If you are friends with me on facebook you've gotten reminders to be wearing your PURPLE this month!! I'll take this opportunity to tell the rest of you now! Wear your purple and share pictures with me please!! We love to spread awareness! 💜💜



As of now, Luella has only had THREE seizures this entire YEAR!! These were all due to being sick and having a fever... now to just keep her HEALTHY!!

25 days... not 175 days

As I looked at my calendar this morning I realized that if Luella hadn't gotten sick last month and hadn't had those fevers with a couple of seizures TODAY would have been the record-setting day at 175 days seizure-free. But, as things happen, we are at 25 days seizure-free today and still counting! Only 150 more days until we get to that goal again!! I always have those goals in my mind. Will she get there? I don't know, but I'm hopeful.

I've gotten a lot of questions from Luella lately about why God lets her have seizures? Why doesn't He just make them stop? All I can tell her is God knows the future and we don't. He has some plan in store, a plan for only GOOD to come from her seizures. I've explained that she has probably already helped LOTS of people because of her Dravet syndrome. I've explained that lots of parents just finding out about their child having Dravet are encouraged by all that she's accomplished and how well she is doing. I've told her that she has helped lots of kids in school understand epilepsy better. She's helped me put my trust fully in God. Maybe these aren't the ways we we would have chosen to do these things but it is all God's will.

The last few weeks have been full of more summer fun for Luella. She entered a couple projects in Open Class at the County Fair and was proud to get two BLUE ribbons. She completed and PASSED two weeks of swimming lessons!! I don't think I've seen her as proud as she was to find out she passed! She did a GREAT job and is really doing an amazing job in the water. It scares this mama a bit, but she LOVES the water! She also got to have a friend sleepover this week! What fun that was!! I'm so excited to see her doing more and more typical kid stuff!! And now she is getting ready for another amazing school year! She will be in 2nd grade and her backpack is packed and ready to go!! But first... a couple more weeks of summer fun!

Sleepover time!!