"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, December 14, 2014

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

Friday, November 21, 2014

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: 

Wednesday, November 19, 2014

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!

Wednesday, November 5, 2014

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

Photo Slide Show - Make-A-Wish Trip

Additional photos of our whole family enjoying Luella's Make-A-Wish trip can be viewed here:
Make-A-Wish Trip

Sunday, October 5, 2014


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!

Tuesday, September 30, 2014

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!

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Monday, September 29, 2014

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