A Very Purple End to 2014!

I've been wanting to make a new "purple" video for 2014 for awhile. I've had SO MANY people share pictures with me this year! It's been awesome!! I decided just to make a end of the year video showcasing all of the purple from the past year. I hope I didn't forget anyone!! I tried to save pictures right away so that I'd have them all in one location. If you don't see a picture you've shared with me, please let me know!

This video is to thank all of YOU! Thank you for wearing purple - whether it was a "Little Luella" shirt or something purple of your own! Thank you for helping us raise awareness in 2014!! Thanks to those of you who supported our fundraising efforts also! We were able to send over $3,000 to the Dravet Syndrome Foundation during the year and about $1500 to the Epilepsy Foundation of Minnesota!! In addition, over 200 "Little Luella" shirts have been sold!! I love randomly spotting a shirt when I'm out and about!! None of this could have been possible with out YOU! We can't thank you enough!

If you are viewing this blog post as an email you'll need to click the link to watch the video on YouTube. Thanks! http://youtu.be/uoEIwG_tw2s

Last year's video (2013) can be viewed here: http://youtu.be/m-IdWMaUi_k

A Very Merry Christmas!

Luella followed up her crazy Tuesday with just one seizure on Wednesday morning.  She ended up sleeping really well Tuesday night. I woke her around 3 am for more ibuprofen but she went right back to sleep. Despite keeping her on a schedule of ibuprofen and acetaminophen she still spiked a fever about an hour after her morning dose of ibuprofen which resulted in a seizure around 10 am Wednesday morning. After she slept most of the morning she started perking up around noon and was so chatty at lunchtime, she hardly ate anything! She hasn't had a fever or a seizure since! We were supposed to go to Christmas in South Dakota with my side of the family on Christmas Eve and since Luella seemed to be doing so much better, we decided to go! She had such a fun time! Santa even popped by grandma and grandpa's house! Thank you so much for keeping Luella in your thoughts and prayers - they got her through this so quickly!

The UTI has us wondering about her bladder reflux. Based on her last visit with the urologist we thought we were clear of any more issues. She is scheduled for a follow-up with her urologist in the spring. We will be contacting him to see if he wants to see her sooner.

Precious Ruby - the little girl I mentioned in my previous post, went to be with Jesus around 3am on Christmas Eve morning. I can't imagine the loss and heartache her family is experiencing. At this time when we should be celebrating the birth of our Savior, they are mourning the loss of their daughter. Please continue to keep the Hanson family in your prayers! http://www.caringbridge.org/visit/rubyeclipse

I want to leave you with a happy memory... While in Florida for Luella's Make-A-Wish trip we had a Christmas celebration at Give Kids the World Village. We got to meet Santa and Luella was mesmerized by his beard! Merry Christmas everyone!

Luella loved Santa's beard!

More memories from Florida on our Christmas card....

4 Seizures on Tuesday

I suspected something was up with Luella on Monday when she was running to the bathroom frequently. It was later in the day when it was really apparent but I thought we'd wait and see how things were Tuesday morning. She was awake in the middle of the night with a fever. Jim gave her some ibuprofen and she settled in and went back to sleep. When she got up Tuesday morning she was chipper and singing. I took her temp and she had a slight fever. I figured she probably had a UTI (urinary tract infection) so I called and had an appointment lined up for 11:15. Between 9:00 and 9:30 Luella had two seizures. Thankfully both were short and no rescue meds were required but they were both tonic clonic and so hard to watch. Her temp had gone up pretty quickly which triggered those seizures. She was hard asleep after those seizures and we couldn't get her to take anything to get her fever down. When we were moving her to go to ER she did wake enough to take some medicine at home so we were able to just let her sleep at home and let the ibuprofen do its job. At 11:15 we went in to see the on-call doctor. Luella slept through most of the visit. She woke enough to get a urine sample and then was out right away again. They confirmed it - she does have a UTI. We have her on an antibiotic now and are actively battling these fevers, trying to stay on top of them with ibuprofen and acetaminophen. Unfortunately the acetaminophen doesn't appear to be helping much so we are trying to time the ibuprofen so that we stay on top of the fever but not give her medicine too much before the next dose is due.

At bedtime on Tuesday her temp started climbing again so we gave the ibuprofen right away but the fever won and she ended up having two more seizures within a 30 minute time-span. Again, thankfully these are all resolving without rescue meds or we'd be in the hospital by now. I'm asking for prayers to get her through these fevers and hopefully the antibiotic will kick in quickly.

On top of Luella's UTI issue today, I learned about another Dravet princess, Ruby, who is losing her battle. I'm in tears tonight as I think of the agony her family must be in. They are planning to disconnect her life-support today - on Christmas Eve. :-( Her situation all started with her getting influenza A. So scary how that could turn into something so devastating. Please pray for Ruby's family and also for Luella.

Seizure Tonight

Well, I was hoping to post tonight with the title "No News is Good News" but instead I'm announcing a seizure tonight to end an EIGHT week stretch! While I'm sad that the seizure-free run ended, getting to go EIGHT weeks without one was such a blessing! All summer we were in such a weekly routine. It's been great to watch her having fun and not having it interrupted by a seizure.

The seizure tonight was a tonic clonic (grand mal). Always hard to watch but thankfully it lasted less than two minutes and she didn't need ANY meds to stop it! It stopped on its own! We were just getting ready to sit down as a family and watch Home Alone with some popcorn. She slept a little bit and then was groggily watching the movie for awhile. Soon she was eating popcorn and giggling at all the crazy stunts Kevin pulled on those bad guys! Such a blessing to see her bounce back so quickly!! A friend just messaged me tonight telling me Luella was on her mind. I have no doubt that God answered her prayers and the prayers of all of us! We thank you all for continuing to keep Luella in your prayers. Dravet syndrome is a battle that we aren't going to stop fighting and we are so blessed that so many of you are prayer warriors for Luella!

This seizure won't discourage us...

                            May the God of hope fill you with all
                                                                joy and peace in believing,
                                                 so that by the power of the Holy Spirit
                          you may abound in hope.

                                                                                                        ~ Romans 15:13

Her Birthday

With all the excitement of our trip to Florida, I kind of glazed over Luella's birthday. I did mention that her birthday was our last day in Florida and she definitely got some special treatment at Give Kids the World Village where we stayed. Luella has been FIVE for one month now... I thought I'd revisit her birthday party and share some of the pictures from the party we had at home after our trip. Some of you may have already seen these pictures - I did send them out to family and posted on facebook. Just wanted to share with our blog readers too!

Luella's reaction to the doll cake!

Of course Luella's party theme was "Belle". I had decided to do a simple Belle dress out of cupcakes but while looking at Pinterest for ideas Luella spotted the DOLL cake - with an actual Belle doll standing up in a cake "dress". That's what she wanted... so that's what I had to make! I still did the cupcake dress too because I wasn't sure how many servings I'd get out of the doll cake. I had the cupcake dress finished the night before her party and she saw it before she went to bed. Her response? "That's not what I'm looking for!" Little turkey!! Good think I had planned to do the one she wanted too or I would have been scrambling! :-) When she went to bed I worked on the doll cake and she was very pleased in the morning!

It was a great party with family and friends. Of course Luella was spoiled! Her favorite gift was the roller skates from mommy and daddy! Ashlyn has a pair of roller skates and Luella LOVES them! She always wanted to wear them but it was really dangerous for her and we'd have to be holding her up. When we were talking about her birthday party we asked what she wanted for her birthday and she said "roller skates"!! This was the very first time Luella actually requested a specific gift. In the past it's just been "presents". It was a milestone for her and daddy was on a mission to find her skates that she could use all by herself! He found a great pair that you put on over a pair of shoes and you can actually lock the wheels to offer more stability. Luella loves her skates and she does really well with them! It was so fun to see her opening something that she really wanted! Of course she enjoyed all of her gifts though! Be sure to watch the video of her "skating" below!

Watch the video on YouTube here: http://youtu.be/sOb1nPu3HqA

If you'd like to see more pictures of Luella's birthday, please view the Picasa Web Album here: 
https://picasaweb.google.com/105439888189691194175/LuellaS5thBirthday?authuser=0&feat=directlink

Luella's 5th Birthday

Roller Coaster Fun!

I had to go back here... one month ago we were enjoying the HOT Florida sun and 85 degree temps. Today I'm bundled up and freezing and it feels like 5 degrees out there in that yucky white stuff!! :-)

I mentioned in the post about our trip that we discovered Luella LOVES roller coasters! I forgot to post the video of her on the Woody Woodpecker roller coaster at Universal Studios. She has such a cute little roller coaster scream!

Luella also enjoyed the Seven Dwarfs Mine Train at Magic Kingdom and even SPACE MOUNTAIN!! Yikes! All the roller coasters we had been on we could be right beside Luella so I was surprised at Space Mountain when I saw we would be in our own seats. I was hesitant to let her ride but she was so excited and Jim said she would be fine. I really didn't know what we were in for on the ride. I had forgotten what it was like. WOW! Pitch dark and FAST! I was so nervous about Luella sitting by herself. Thankfully I could hear her screaming most of the time so I knew she was okay. And I leaned forward a few times to touch her shoulders. When the ride stopped Luella was fine... she LOVED it!! Nothing scares her. She would have gone again. Knowing what the ride was like I probably wouldn't have let her do it.... but she did and it was one of her favorite rides. When we got off she said "that was super fast!" They even gave her a special pin that said "First time on Space Mountain"!

Thankfully God made Luella's new medication (diamox) protect her during our trip (and since)! These rides would not have been possible before! It was such an answer to prayer to be able to enjoy this special time as a family!

Seven Dwarfs Mine Train

Space Mountain

Luella wearing her "First Time on Space Mountain" pin and all smiles after the ride!

A Wish Come True

**Be sure to check out the slide shows below!**

Back in July Luella made a wish and during the middle of October that wish came true. Make-A-Wish Minnesota granted Luella her wish to meet Belle! Our family left for Florida VERY early in the morning on October 15th. We had been counting down the days for a month and now the day was finally here. Everyone was ready to GO!

We stayed at an amazing place called Give Kids the World Village (GKTW) - a place especially made for Wish families. It was spectacular! GKTW really knew how to make our entire family feel special. When you have a child that has special needs it’s easy to get wrapped up in the daily grind. At GKTW we were able to really enjoy our time as a family and to not let the worries we often deal with get in the way.

One night at the village it was Christmas and after our turkey dinner the kids got to meet Santa and they each picked out their own Christmas gift! It even “snowed” in Florida! One of the kids’ most favorite things at GKTW was the Ice Cream Palace which was open from 7:30am - 9:30pm!! You could have all the ice cream you wanted anytime of the day for free! They were excited to get ice cream for breakfast one day and we all had ice cream for lunch once too!

Luella’s wish to meet Belle was granted on Saturday (October 18th). Luella met Belle in the Disney Wish Lounge and got to spend about 30 minutes with her. At first Luella was a little surprised to see Belle in her blue dress since she prefers her in her yellow dress, but she got past that quickly and thoroughly enjoyed her time with Belle. Belle read to Luella, they colored, visited and played and had a terrific time together!! There were many hugs and even a kiss on the cheek! When Luella’s time with Belle was over Belle left and a Disney employee came in and said that Belle would like to see Luella again later in the afternoon. She told us to be near the Guest Relations building during the afternoon parade and someone would come and find us after the parade to take us to Belle. We watched the parade and when Belle’s float came around she spotted Luella and waved and blew her a couple kisses! After the parade we were escorted to a private room where Belle (wearing her YELLOW dress) AND Queen Elsa were waiting!! Belle asked Elsa to join her because Luella’s sister (Ashlyn) was dressed as Elsa for the day and feeling a little left out. It was such a special time!

The girls got to spend about 15 minutes with their princesses! Luella had fun comparing her own little Belle dress to Belle’s REAL yellow dress. Belle has heart of gold and it was so incredible to see Luella’s Wish come true! Thank you so much to Belle, Elsa and the rest of the Disney staff that made our visit so special.  They went above and beyond for Luella (and our entire family).

We had so many wonderful opportunities while we were in Florida! We would have had to stay there a month to do everything that was offered to us! We had to plan out our days and decide what was most important to do. We were able to spend three days in the Disney parks (Magic Kingdom, Epcot and Hollywood Studios), one day at Universal Studios, part of a day at Sea World and the rest of that day visiting the ocean at Cocoa Beach! It was a whirlwind of activity! It was long days and lots of excitement and activity and Luella did terrific!! I would have been extremely nervous letting Luella onto some of the rides she did before adding this latest medication. It has offered her freedom to do some of the fun things that would have normally triggered a seizure. We discovered that Luella LOVES roller coasters! She has no fear. She even did the roller coaster on Space Mountain!! After going on that one I would NOT let her do it again but she loved it! She got off that ride smiling and saying that was “super fast”! This momma said, “Yikes!”

Luella did have one seizure while we were in Florida. It happened on Sunday at Universal. That seizure was rather intense as it happened just after she fell asleep in her stroller and it took three doses of her rescue meds to stop. I should have had her buckled in. At the start of the seizure she fell out of the stroller and split her lip. :-( We were in the Harry Potter area at Universal and it was pretty busy. We moved off to the side to take care of Luella and a group of employees kind of formed a wall around us to give us some privacy and I’m sure to shield what was happening from the visitors as well. An EMT from Universal escorted us to a back alley area where Luella’s seizure finally stopped. An ambulance had already been called but since we felt Luella was stable at that time we declined services and got her situated in her stroller to sleep. She slept for about 3 ½ hours while we continued to explore Universal. She woke up smiling and laughing and was ready for more rides!

In addition to meeting Belle, Luella’s other favorite part of the trip was swimming in the ocean. She loved jumping in the waves and had fun playing in the sand! It was so amazing to seeing her enjoying her time swimming! She got to swim once at GKTW also! So incredible!




To wrap up our incredible week, the last day was Luella's 5th birthday!! She had a terrific time getting spoiled at GKTW before we headed home!

The whole trip was just magical! It was a blessing to our family and we will forever be grateful to Make-A-Wish for making Luella’s wish come true!

Photo Slide Show - All Things Belle
https://picasaweb.google.com/105439888189691194175/LuellaSWishAllThingsBELLEOctober2014?authuser=0&feat=directlink


Photo Slide Show - Make-A-Wish Trip
https://picasaweb.google.com/105439888189691194175/LuellaSWishOctober2014?authuser=0&feat=directlink


Additional photos of our whole family enjoying Luella's Make-A-Wish trip can be viewed here:
https://picasaweb.google.com/105439888189691194175/MakeAWishTrip?authuser=0&feat=directlink

Make-A-Wish Trip

Seizure!

Well, we just made it to five weeks seizure-free. Jim put Luella to bed tonight but shortly after putting her to bed her pulse-ox alarm started going off. We get a false alarm every now and then, but this one kept on beeping. I ran upstairs and as soon as I opened her door I knew she was seizing just from the sounds I heard. It was one of those difficult seizures taking three doses of midazolam to stop and then just praying it was done. Jim and I sat there with her lying on her bedroom floor. She was breathing really raspy then she just stopped. Just stopped breathing. We right away moved her around, rubbing her back and chest trying to get her to take a breath. Jim was grabbing the oxygen tank and formulating a plan to get her to the ER quickly when finally she took a breath!! Scary!! It was probably close to 30 seconds but felt even longer. Having so much midazolam can cause respiratory distress so we always watch her closely and of course she always has her pulse-ox on after a seizure too. We stayed with her for awhile to make sure she was okay then tucked her back in to bed. We are praying that this was just one seizure in five weeks and tomorrow we start counting towards another five PLUS weeks!

This seizure-free time was such a blessing! It has been SO long since we've been able to enjoy such a long stretch - over 2 1/2 years!! Luella has been so happy and fun these weeks. We pray that she can continue on where she was when she gets up tomorrow morning. Thank you all for your continued prayers and support!

We're in the October 'Hood Magazine!

The October issue of 'Hood Magazine is on the shelves and we're in it! We are one of four families featured in the cover story "Families that Inspire"! Pick up a copy or view it online here: http://issuu.com/thehoodmagazine/docs/oct_2014hood-final/20?e=2007823/9525569. Our story starts on page 21! The other three families have very interesting and inspiring stories as well, so be sure to read them all! You can also read the story on the 'Hood website - that version is a little longer (the print version was edited down a little bit) - http://www.thehoodmagazine.com/2014/09/25/47276/families-that-inspire-the-johnson-family.

We are excited to spread awareness about Dravet and hopefully help another family along the way!

Reminder: If you want to keep up to date with Luella's blog you can sign up to get automatic emails whenever a new post is added. Just enter your email address in the "Follow by Email" box that is to the right. You'll have to verify your subscription by clicking a link in the email you'll receive. Thank you for following Luella!!

4 WEEKS = 0 seizures!

Luella is at FOUR WEEKS seizure free!! I thought I'd share a cute little "Days of the Week" song she learned at preschool and sang for us! She sings it twice in the video so replay it when it's done to hear FOUR weeks worth of ZERO seizures (plus you'll get a good dose of Luella cuteness)!! We feel so blessed! God is good!

Link to watch video on YouTube; http://youtu.be/H6QQ10P-2M8

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!

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!!

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/

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.

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.

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)

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.

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!!

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.

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

Still Want a Little Luella Shirt?!? New Order!!

After so many people saw us all wearing our shirts around on Monday we've had lots of requests for shirts. We will be doing another order mid-July. The cost will probably not be as low as before but it'll for sure be under $20 - most likely anywhere from $13 to $18 depending on the response. I will be happy to ship shirts to people who aren't local too! We want to spread awareness far and wide!

If anyone sees you wearing your shirt and asks about one - send them my way!!

And PLEASE send me pictures of you wearing your shirts!! I would like to make a slide show to share on Luella's blog.

If you are interested in a shirt please email me (heather.m.johnson@gmail.com) and let me know! Sizes available are -
Youth: YXS, YS, YM, YL, YXL
and
Adult: S, M, L, XL, XXL and XXXL (XXL and XXXL will be $2 extra).

A sizing chart can be viewed here: http://www.customink.com/items/sizing/04600_lineup/standard.htm

The shirts will be ordered locally again at Print Express!! They did a tremendous job!

Here's the finished shirt design (as printed at Print Express)...
The butterfly is made from Luella's hand prints.

a cake 4 a cure: WINNER!!

Hi everyone!! I was so excited to draw a winner for my fundraiser today! I had an initial goal to raise $500 for the Dravet Syndrome Foundation... That goal was reached quickly so I increased my goal to $1000 and our very generous friends and family helped us surpass that goal as well!!

We ended up raising $1,340!!! 

That is so exciting!! I can not wait to send that money to the Dravet Syndrome Foundation!! Thank you so much to everyone that contributed!! You are amazing!!

I took a video of me doing the drawing so you'd know it was done far and square!! :-) So many friends and family are included in the drawing and I didn't want anyone to think I was playing favorites!!

The winner is.... Lucas and Wendy Peters!!! 

YAY!! I'm SO incredibly excited to get to make a cake for you sometime!!

Here's the video of the drawing...
( http://youtu.be/mdWOmxpkmPQ )

A Perfect Purple Day

Wow! The first Dravet Syndrome Awareness Day was so much fun!! We saw lots of purple around town and online!! If you wore your purple and snapped a picture, please share it with me!! I know some people didn't have their Little Luella shirts in time so whenever you can get a picture in your shirt please take a picture and email me or post it on facebook! I hope to put together a little slide show soon!

If anyone wants a shirt and didn't order one, please let me know if you'd like to be on a list to get one. Once we have enough interest we'll do another big order! Thank you!!

  

It was all about Luella today!

Sisters = Love

Shirt design!!

Our family in purple!

Ending the night at Pizza Ranch!! Thanks to the friends who wore their purple out to eat with us!

Thank you to everyone who supported us today and helped raise awareness for Dravet Syndrome!!

Stay tuned tomorrow for the 

winner of the cake raffle!!

Wear Purple on Monday - Last Day for Cake Fundraiser

Monday - June 23 - is Dravet Syndrome Awareness Day!! Don't forget to wear your purple!! If you have a Little Luella shirt please wear it and if you can, please share a picture with me!! You can share a picture of whatever purple you happen to wear! We'd love to see you showing your support and helping us raise awareness!

Monday is your last chance to enter my fundraiser / cake raffle - {a cake 4 a cure}!! If you want a chance to win a custom cake made by me, don't delay! I will announce the winner on Tuesday!! I can't wait to see who I get to make a cake for. To enter the raffle contact me or make a payment online on the fundraiser website before midnight on Monday! http://www.youcaring.com/other/a-cake-4-a-cure/176868

One Week until Dravet Syndrome Awareness Day - - Win a CAKE!!

One week from today on June 23rd it will be the very first Dravet Syndrome Awareness day!! If you haven't entered my raffle / fundraiser {a cake 4 a cure} - NOW is your chance!! Read all the details for how to enter on the fundraiser website here: - http://www.youcaring.com/other/a-cake-4-a-cure/176868

So far I have raised $795!!! Help me reach $1000!!! All money will go to the Dravet Syndrome Foundation to help find a CURE!!

THANK YOU to all of you who have already donated!!!