"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

Saturday, February 22, 2014

Long Overdue Updates: Seizures, School, IRUN4, Marijuana!!

I've been meaning to post an update for awhile but life just gets too busy! I've broken the updates down and added some headlines so you can look for what's important and read that if you don't want to read this whole LONG post!! :-)

Seizure Update
In January Luella ended up having a total of three seizures. So far in February she's had five. She had a random seizure on Feb 5th and then we tried to go swimming as a family one Friday night. Luella enjoyed swimming for almost an hour and then a seizure. I was glad she did get enjoy swimming for that long, usually if she has a seizure from swimming it happens right away. She was so sad to have to leave the pool. Another seizure landed on Valentine's Day right before we were to go to grandpa and grandma's for supper. Jim and I ended up apart that night since he stayed home with Luella and Ryker (who also wasn't feeling well) and I took Burke and Ashlyn to grandpa and grandma's myself. Two other seizures were during the middle of the night this past week. She had a cold and ended up with a fever of 102.7. I was home alone with the kids since Jim was gone for work. Usually Luella doesn't have seizures during the night and especially not two. I've gotten pretty good at dealing with seizures on my own since Jim's been traveling so much. Well, usually I'm the one that deals with the seizures since I'm with her pretty much 24/7 but I usually have Jim around for support. Not having Jim's emotional support during the middle of the night was hard. Thankfully the seizures that night were very short. I sat up with Luella for three hours until her fever came down then I took her to bed with me. That was a short night!! Unfortunately Luella (and I) are still battling this cold but at least she hasn't had any more fevers or seizures. I'm glad to have Jim home again with no plans of work travel in the immediate future too!

Our Little School Girl
Luella started School Readiness the first week of February! School Readiness is a one day a week preschool for kids ages 3-5. It is held at the school in the same
Luella's first day of school!
room where we go to ECFE and with the same teacher. She feels very comfortable there and loves it!! I knew she would have no problem going. I wasn't feeling nervous about it either. Luella has a one-on-one paraprofessional with her while she is there and we held a training session with all the staff to teach them what to do in the event of a seizure. There are two paras trained in case one happens to be gone, and all the staff  practiced administering Luella's seizure rescue med on a child-sized medical mannequin. Everyone felt really comfortable with it. On Luella's first big day of school she was happy and so excited!! I was okay until it was time for me to leave... then the tears flowed. I suppose it is much the same for any mom leaving their youngest off to their first day of school... although I had the added worry of Luella having a seizure there though and trusting the para and staff to take care of her. I didn't stay. I thought it was best just to leave. I went to the van and prayed. I went home and cleaned myself up then went to my Bible study where I was surrounded by many supporters who lifted both Luella and me up in prayer!! Luella did awesome and greeted me with a big hug when I picked her up! She was there for 2 1/2 hours and commented to me that she was there "a long time". It probably did seem long since we are only there 1 1/2 hours for ECFE.

The morning after her first day of school she had a seizure just before 8am. I was so glad it didn't happen the day before!! Luella has had three school days so far and no seizures at school!

Luella with her paras - Norma (the back-up) and Jessica (her regular para).
 IRUN4If you are a friend on facebook you've probably already seen some posts about IRUN4. A friend told me about IRUN4 a few weeks ago. http://www.whoirun4.com/ IRUN4 is an international organization that pairs runners up with people who suffer from a disease or disability. The IRUN4 site says," Runners are able to find a whole new sense of purpose in their running while sharing who they are running for and bringing awareness to diseases and disabilities of all types. After an inspiration from a close friend who was battling bilateral hip dyspasia – Founder Tim Boyle found a whole new inspiration to run."

Sue RUNS4 Luella!
I signed Luella up and within a matter of hours she was already paired up with an amazing lady named Sue from Illinois!! There is a MONSTER waiting list of runners waiting to be matched up with someone so if you have a child (or adult) who has a special need and would like to get matched up with a runner please visit - http://www.whoirun4.com/match-me/. You won't regret it!!

The whole IRUN4 thing is amazing!! Thinking about these amazing runners who dedicate their runs/work outs to so many special people. The website doesn't explicitly say the runners are to pray for the people they run for but you can tell so many of the runners are Christians and really pray and lift up those they run for. Luella was so blessed to be matched with Sue! She is one amazing lady and I know she has a heart for the Lord! I asked Sue to give me a little quote about why she signed up for IRUN4, this is what she said...

"It tore at my heart to think that there are kids out there whose health may not allow them to run a 5k, 10k or half marathon, and I wanted the privilege to be able to run and to pray for someone special with whom God would match me and hopefully allow me to encourage that special child on their journey through their struggles. And wow did He! Luella has blessed my heart so many times in just the last few weeks since we've been matched.  Learning about her disability has brought an awareness about something I've never known. I am praying with you all for a cure!"

Isn't she amazing?! Sue will be running her first race (a 5K) dedicated to Luella on Saturday, March 1st! We will be cheering you on across the miles Sue!!!

Medical Marijuana
We are still plugging away, trying to educate people on the importance of legalizing medical marijuana! A few weeks ago the editor of our local paper wrote an interesting editorial about medical marijuana. She referenced our family but not by name. Jim followed up her editorial the next week with a Letter to the Editor which I encourage you to read - Jim's Letter to the Editor. Jim did a great job of laying it all out there. Unfortunately it sounds like Governor Dayton still isn't supporting us. If you haven't already sent him a letter I encourage you to. You can ask me for one already printed and ready to go, or you can print one off my previous blog post. You can also talk to your government and law enforcement friends. If you don't know what to say... point them to this blog! We would be happy to talk to anyone that has questions.

Ciara’s Butterfly Bash
A Benefit for the Dravet Syndrome Foundation
This Great Gatsby-themed event includes cocktails, dinner, dancing, as well as silent and live auctions. This is held in Greenwich, CT so many of you may not be able to attend, however, they are also looking for donors or items to be donated to the auction.


Thank You
Again we thank you all for your continued prayers for Luella and support to our family! We have some very special angels among us!!

1 comment:

  1. I've been thinking about you guys and was glad to see an update :)
    Those night time seizures seem to be more scary for some reason don't they?
    Glad that Luella is enjoying school :)
    I have never heard about IRUN4. It sounds really neat! I'm going to have to look into it. And I just printed off my letter for Gov. Dayton. Jim's letter was awesome! You two are doing a great work.