"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, October 5, 2014

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!

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

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.