"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

Sunday, August 31, 2014

Three Seizures in Three Days

Luella just had her third seizure in three days. All of which required rescue meds to stop. This is not the norm for her and it has us concerned. She hasn't been able to play outside for very long without having a seizure these last three days. Even though it's not terribly hot she is just getting too overheated. Today she had a temp of 100.3 when Jim brought her in seizing at 10:45 this morning. We just got home from church and she immediately hopped on her tricycle to ride a bit. She wasn't even running around excessively. Part of Dravet syndrome includes disruptions of the autonomic nervous system which regulates body temperature and sweating. Luella has always had issues with this but it appears like we are seeing some more prominent problems these past few days. Many Dravet kids wear cooling vests to help keep them cool. We may have to look into doing that for Luella as well.

We would appreciate your prayers as we start a new week. We are going to attempt to keep things low-key for Luella for awhile. We don't like her having a seizure every day. Hopefully she can get through Wednesday and Friday this week at school without a seizure.


Friday, August 29, 2014

A Seizure at School

Luella closed out her first week of school with a seizure at school today. I knew the day would come eventually ... and today was the day.

Luella has been anxiously waiting to play on the playground at school. On Wednesday some kids were playing there but Luella got to ride tricycle instead. She really wanted to go on the "twirly slide" though! :-) This morning when Luella woke up she kept asking if she would get to play on the playground today. I told her I wasn't sure. It had rained yesterday and things were still a little wet. I didn't want to get her hopes up.

I dropped her off at school and right away she was asking about the playground again! We said our goodbyes and she was off. I was home busy doing some things and just about ready to head out to pick Luella up when my cell phone rang. It was Jessica - Luella's para. "Luella is having a seizure. It just started. We are on the playground." Oh man!! The playground?! Why can't this little girl do the things that a little girl should be able to do without having a seizure?! My heart is racing. I'm out the door immediately. I called Jim on my way and he is on his way too.

By the time I arrived they had given Luella the first dose of midazolam and the seizure had just stopped. She had a crew of people around her and they were all doing exactly what they should! This was the very first seizure that someone other than Jim or myself has dealt with! I've told everyone at school that really I feel like I should be more nervous leaving her there but I'm not. I know she is in good hands and the seizure today proved it! Jessica saw the seizure immediately and even though Luella was on a sidewalk she got her down safely and did everything perfectly! We are so grateful for the loving, caring people that are there to watch Luella!

Last night when Luella had a very difficult time getting to sleep, she was whining and fusing. Jim went in and reminded her that she had school in the morning and she needed to be getting to sleep. She brightened right up and talked about how she was going to play on the playground, go down the twirly slide and she said Jessica would be there and "Jessica loves me".

Luella is still resting at home and no doubt will be awake soon telling me all about the fun she had on the twirly slide today! At least the seizure was at the end of her playtime so she will have those memories!

Recovering after her seizure at school today with Sophie keeping her cozy.



Monday, August 25, 2014

Preschool!!

Today was Luella's first day of Preschool!!
Ready to GO!
She is going three days a week in the mornings... and mommy is NOT there with her!! We tried this out last winter and spring doing a one morning a week program starting in February. Luella had a one-on-one paraprofessional with her who was trained in taking care of her in the event of a seizure. That went great and now here we are at the beginning of a new school year!

I was glad that Luella was able to get the same para she had last school year. She is in a different classroom and has new teachers so having the same para is great. Jessica did great with her last year and we are excited that she is right by Luella's side again this year!!

Also new this year is that Luella's special services will happen either right before or during her school day so I will not be making multiple trips up to the school with her. She will have speech, OT and DAPE services again this year. She has a new DAPE teacher who we met this morning and he seems great too! So lots of new things this year but Luella is ready for it all! She didn't care one bit that I was leaving her there this morning. I had to leave fast to keep too many tears from falling!

It's hard leaving her in the care of someone else but Jim and I have trained all the staff that will be with Luella and they all know what to do if she has a seizure. We just need to let go and trust that God will take care of our precious little Luella.

Luella with her purple kitty backpack!

Luella and her para Jessica.
Luella and her teacher Mrs. Angie.
FOUR in school now!! <sniff, sniff>
Burke (5th grade), Ryker (2nd grade), Luella (preschool) and Ashlyn (4th grade)



Sunday, August 24, 2014

An Anniversary... to remember.

This time I'm writing about an anniversary we will remember. Fifteen years ago on August 21st Jim and I were married! Fifteen YEARS?!? How can that be? Sometimes I look back and it seems like even longer but other times it feels just like yesterday. Jim and I have known each other for as long as I can remember. We started kindergarten together! And we had lots of plans and dreams for our family! It's been fun these last fifteen years and while some of our plans haven't played out exactly like we would have hoped, we are in this together and I wouldn't want anyone else by my side!

As we were approaching our anniversary I was thinking about the possibility of Jim and I getting away for just a night alone. We haven't had a night away from all the kids in over six years and we've never left Luella - EVER. The thought of what could happen while we were gone was always in my mind but I decided we just needed to do it. Our moms graciously accepted our request to stay with Luella and we planned our night away. The boys had friends to stay with (thank you!!) and Ashlyn stayed home to help with Luella.

We didn't go too far away - just to Sioux Falls (30 miles away). We left Friday afternoon and came home Saturday afternoon. We had a fun time and I'm proud to say I didn't worry about Luella. I had prayed about the weekend and I felt really good about everything. Luella had a seizure on Wednesday night so I felt like she would probably be fine through the weekend. And our moms did a great job!! I wish I had gotten a picture of them with Luella and Ashlyn. I think the girls had a fun time!

Hopefully this is something that Jim and I can do more often.


Monday, August 18, 2014

Run for Research - Virtual Half Marathon!!

The Dravet Syndrome Foundation (DSF) is doing a virtual half marathon - Run for Research - for walkers AND runners to participate in a race to raise money for their research grant program. This half marathon does NOT have to be completed all at once! You have from September 1 - 14 to walk or run the 13.1 miles. You can do it all in one chunk or break it up over several days. You report your time back to DSF and they will send you a finisher's medal in the shape of the DSF butterfly! The cost is $30 (in the US, $35 overseas).
You can read more about the Run for Research Virtual Half Marathon on the DSF website (http://www.dravetfoundation.org/archives/events/dsf-virtual-half-marathon-run-for-research).

If you want to sign up, be sure to join Luella's Team  - "Run for Luella" - by selecting "Join an existing team"! 

If you can't walk or run but would like to make a donation to Luella's Team you can visit the team page here:
http://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1109317&lis=0&kntae1109317=D2E39CB436C94732BA1971ECB138A509&supid=411355284

I know we've done a lot of fundraising efforts lately so I will not feel offended if you don't make a donation to another one... I just thought this virtual half marathon might appeal to another audience! Thank you again for all of your support!!



Sunday, August 10, 2014

An Anniversary.... we'd like to forget

Four years ago yesterday (Saturday, August 9th) was Luella's very first seizure. As much as I'd like to forget that day and the many, many seizures that have followed, I can't. It's like they are permanently etched in my brain. Even tiny details like what she was wearing still linger. If you want to read more details about that first seizure you can go back to my first post and read it there - http://littleluella.blogspot.com/2010/08/on-monday-aug-9th-luella-woke-up-early.html

While we have so much to be grateful for in regards to Luella it's also hard not to think of everything that's been taken away with these seizures too (and what more we might lose). Dravet syndrome is not fair. I try to not dwell on the negative, but I'm only human and there are times when it takes over. Thankfully I have my faith to fall back on when I don't know what else to do. You've probably noticed the verse I posted at the top of the blog from Deuteronomy 31:8
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.
I have that verse hanging up too and I look at it often. I say it over and over again in my head. I know that God is always with Luella and us every step of the way.

We've tried to do too many fun things in the past week or so and Luella has had four seizures now in just 10 days. She actually had one yesterday on her seizure anniversary. :-( Play lands, fairs, children's museums, parks, water parks, etc... they are all too much fun and too much fun can be a seizure trigger. Thankfully up until this point this summer she has maintained more of a one-a-week average for seizures so hopefully things will settle down again. We ask for prayers that Luella would have fewer seizures especially as we try to squeeze in a few more fun things before school starts! (Yikes! School? Maybe pray for me too!!)

I think about Luella's prayer. The prayer she says every night before she goes to bed... "Please take my seizures away." I think about the prayers of Luella's sister and brothers. Every night they ask God to take Luella's seizures away. I know they have asked in the past why God hasn't taken the seizures away. Why He still lets Luella have seizures. We've answered that we don't know why. That it is difficult to understand and someday it'll all become clear to us. I recently read a great blog post by another mom with a child who has epilepsy who addressed this very topic. I love how she answered the question and the scripture she quoted from Romans 5:3 - 4
But we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
I think I'm far from rejoicing in suffering..... but I still have hope.

Tuesday, July 8, 2014

Fundraiser Success!

I sent off all the donations to the Dravet Syndrome Foundation - $1500 total!! What a great success!! I just wanted to thank you all again for your support... it means SO MUCH to us!!

The Dravet Syndrome Foundation posted a little story about our fundraiser on their website here: http://www.dravetfoundation.org/archives/4370


Last Call for Little Luella Shirts
I will mention one last time that a final order for Little Luella shirts will be going in on Friday of this week (July 11th). Right now we have an additional 50 shirts to order!! We are so overwhelmed by the support we have received for these shirts!! We'll have about 180 people wearing these shirts when we are done!! What a GREAT way to raise awareness for Dravet Syndrome and show support for Luella!!! The price for the shirts will be $13 or LESS at this point. Once again, I'm happy to mail shirts to people not local. Read more details about the shirts on my last post here - http://littleluella.blogspot.com/2014/06/still-want-little-luella-shirt-new-order.html


Luella Update
Luella has been doing about the same. She is still averaging about a seizure every week. We added a new medication and are gradually increasing the dose. We are hopeful that it will help her go even longer between seizures.

Many have asked about the status of the medical marijuana for Luella. In case you missed previous posts - it did pass in Minnesota but unfortunately we have to wait a year or more to get access. July 2015 is when it is scheduled to be available. The state is allowed one six month extension, so at the latest it could be January 2016. While we wish we could have it right now, we are so thankful that it is in the works and we don't have to wait for the next legislative session to present another bill!

Thank you for following us on this journey with Luella - for your support and most importantly your PRAYERS! We serve a mighty God....

                        “What no eye has seen,
                                what no ear has heard,
                         and what no human mind has conceived”
                                the things God has prepared for those who love him.
                                                                              1 Corinthians 2:9