"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

Monday, September 22, 2014

2.5 Years to get to 3 Weeks

We are SO excited to report that Luella has been seizure-free for THREE WHOLE WEEKS!! Looking at her seizure log we have to go back 2.5 YEARS to find the last time she went this long! About two weeks ago we started weaning Luella off yet another failed seizure medication and at the same time she started taking a new seizure medication. We are hopeful that this new medication (diamox) is what is helping her! We've been in such a routine of weekly seizures for so long - it feels really strange to go this long now without a seizure. Luella just seems so much happier! We are loving this so much and praying that we can keep adding days to this seizure-free stretch! We appreciate all of your prayers and ask that you would continue to pray for Luella! Please pray that this medication will help her have many more days of seizure freedom!

Luella and Ashlyn ready to make s'mores!

Friday, September 19, 2014

Run for Research THANK YOU!

Just a quick post to thank the TEN people who signed up with me to be part of Luella's team for the Dravet Syndrome Foundation's Run for Research virtual half marathon!! Some of us walked, some of us ran, some did a little of both. Some did their 13.1 miles all at once, others broke it up and put their miles in during the scheduled event time September 1 - 14. I wanted to thank all of these wonderful people again for putting in some time and effort to bring awareness to Dravet syndrome and to also help raise money for research! Luella and thousands just like her need a CURE!! Over $10,000 was raised for research through this event! If you didn't walk /run or donate... don't worry, there will be next year!! DSF hopes to make this an annual event. Thanks again!!


Saturday, September 6, 2014

Luella Made a Wish

We have some exciting news.... Luella has been granted a Wish from Make-A-Wish Minnesota!! Make-A-Wish visited with our family and spent some time with Luella figuring out what her perfect wish would be. Luella wished to fly on an airplane and see Belle and Belle's castle!! Make-A-Wish said YES and our whole family will be going to Disney World in October! We are SO excited!! Luella is extremely excited!!

The entire Make-A-Wish experience has been amazing so far and we haven't even gone on Luella's trip yet! They have completely spoiled Luella! Shortly after getting the letter that the wish was approved, Luella got a box in the mail with some various Belle-related gifts. We held off for a little bit telling the kids just so they wouldn't have so long to wait for the trip. We recently let Luella open her gifts and revealed the trip and everyone was so excited! Luella was so happy with the presents in the box! The older kids caught onto the meaning of the gifts but I took Luella aside and asked her if she would like to fly on an airplane and she did a little gasp and said "Yes!" Then I asked if she wanted to meet the real Belle and she had a little bigger gasp and said "YES!" It was so cute!! She is very anxious for the trip. First up on our "to do" list is to make a countdown calendar to help her understand how many more days until we go! After the longer break from school because of Labor Day, I got her up on Wednesday for school and I said "Luella, do you know where you are going today?" I was looking for the answer - school! Instead I got "Belle's castle!?" She definitely has it on her brain! :-)

The thought of getting to do something like this as a family without even having the hassle of planning and figuring everything out is just amazing. (I wish they would come and pack for me too though!) I am SO looking forward to the time to just enjoy doing some fun things and to relax as a family! We would greatly appreciate your prayers for Luella during her trip as it will be a very fun and exciting time for her and fun + excitement can = seizures. We will try to take our time and only do what she can handle and hopefully it'll be a terrific week making LOTS of great memories!!

If you'd like to learn more about Make-A-Wish, please visit - http://mn.wish.org/

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.