"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

Thursday, July 30, 2015

I Hate Seizures

I really hate seizures. I especially hate seizures that start in her sleep. That's what happened tonight. After Luella fell asleep we heard her alarm going off and by the sound I heard next - a gasping breath - I knew it was not a false alarm.

She's laying there - eyes wide open, not blinking, just staring. Oxygen is dropping. Heart rate is increasing. Alarm is ringing. She is smacking her tongue. I'm praying. First dose of midazolam does nothing. I'm praying. Second dose, nothing. Oxygen is dropping fast - down to 21%. I'm praying. Finally after a third dose and a few minutes later it stopped. Oxygen levels improve and her heart rate slows down. She closes her eyes. And I thank God for getting her through this seizure. Then I cry. I hate seizures. I hate seeing my baby girl like this.

On a positive note Luella was just a few days from making it SIX WEEKS seizure free! She made it 39 days! We are praying that now that this seizure is out of the way she can really enjoy these last few weeks of summer before school starts and that she can have LOTS of fun!


Thursday, July 16, 2015

Summer. FUN.

We are so thankful that Luella is having a fantastic summer!! We had two days of successful swimming earlier this week! Sunday we were in a little pool in our backyard and Monday we opted to be inside and escape the heat at our local indoor pool... and Luella did great!

Here's a little video of all FOUR kids enjoying our little blow-up pool! 

(Watch on YouTube here: https://youtu.be/PwW_omo_EL4)

I faced my fears of taking the kids swimming all by myself and we went to our aquatics center on Monday afternoon. Luella had SO much fun! Everyone did. It felt so good! While I couldn't completely be "at ease" - the backpack with her meds and oxygen was sitting right by the pool and I was always an arms-length away from her... there were a few times when she was underwater and moved a little awkwardly and she gave me a little scare! She is a little FISH and loves to have her head underwater! Overall, it was a really fun day and I LOVE to see her having fun just like any typical five year old! Such a blessing!!

June was full of lots of fun too. We took a little mini-vacation up to the cities. We spent a day at Valleyfair and everyone had a blast! Luella enjoyed all the rides - especially the roller coasters!! :-) We also went to Como Zoo, and The Mall of America where we got to go to Sea Life MN. We stayed at The Water Park of America and spent a lot of time enjoying the water slides and all the fun there. Our first time down at the water park Luella got to enjoy a good hour of fun before she ended up having a seizure. We did the family water slide a few times and lazy river and just had fun swimming in the pools. It wasn't until she found her way over to the "little kid area" where she was SO active - running up steps and sliding down the smaller-scaled slides that she had a seizure. Thankfully it did stop quickly on its own and she slept awhile in my arms right at the water park and then was up and at it again for another 30 minutes before we took a break for lunch and visited the zoo in the afternoon. Later that night we did the water park again and since she remembered the kiddie area, that's right where she wanted to be... and it didn't last long - another seizure! This time it was later at night and even though she slept a bit she wasn't quite up to being in the water again so we just called it a night. We were so happy she had had so much fun in the water and got to enjoy almost two hours playing there... despite the seizures! It was such a fun trip.

Here's a little slideshow of some of Luella's summer fun!
 

We have much more fun planned for the last month before school starts! I CAN'T believe we'll be sending our baby girl off to school! This will be hard for me. I'm going to try to enjoy every minute. We just pray that we can do everything we have planned for the remaining weeks of summer with little or NO disruptions from seizures! Thanks for all the love and support!




Wednesday, June 24, 2015

2015 a cake 4 a cure Winner!!

Hi everyone!! I was so anxious to draw a winner for my fundraiser today! My goal was $1,000 this year and all of your generosity helped me to pass the goal once again!! Thank you so much!!

We ended up raising $1,175!!! 

All of that money will be sent to the Dravet Syndrome Foundation to help find a CURE!! Thank you so much to everyone that contributed!! You are all 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..... Angie Fick!!!! 
Yay Angie!! I'm super excited to make a special cake for you!!

Here's a video of the drawing...



Thanks again everyone for all your support!! We are SO BLESSED to have such an amazing network of friends and family to support Luella!!


THANK YOU!!! 


Tuesday, June 23, 2015

$5 Challenge!!

Here a $5 CHALLENGE!! I'm challenging everyone who hasn't already donated to a cake 4 a cure to donate JUST $5. What's 5 bucks? ...but together those $5s CAN make a difference! Help me surpass the amount we raised last year! We need a CURE!!

You have until midnight!! Winner of the cake will be announced tomorrow! YAY! If you are too far away to win the cake you can STILL DONATE!! http://www.youcaring.com/acake4acure/

Donate online, drop it at my house, met us at Pizza Ranch (in Luverne) tonight at 6:00 (wear purple)... I'll be around to take your donations!! Thanks!! Checks can be made out to "Dravet Syndrome Foundation".

Do this for Luella.... OUR WARRIOR!!!

Monday, June 22, 2015

Last Chance for CAKE & A Father's Day Seizure & Wear Purple

Our - a cake 4 a cure - fundraiser is winding down!! You have until midnight tomorrow - Tuesday - June 23rd - to get your donations in and get a chance at winning a custom cake! Every $5 gets you an entry and every dollar will go to the Dravet Syndrome Foundation. Luella and so many others need a CURE!!

Submit your donation online here: http://www.youcaring.com/acake4acure/
Or give me a check made out to "Dravet Syndrome Foundation"



Father's Day Seizure

Jim had to give Luella a dose of midazolam (her seizure rescue med) yesterday on Father's Day. Not the best way to spend a special holiday. She had just fallen asleep for a nap and the seizure started. Those darn sleeping seizures are so tough to stop. They usually don't stop on their own. Thankfully it was just one dose and she slept it off and was better later. That actually makes three seizures this month - the other two were at a water park on a little trip we took earlier this month. Two seizures in one day there but that was a high-risk activity for her... just too much fun and excitement. :-(

That's why we do this... creating awareness, doing fundraisers... helping people understand that Dravet syndrome affects every aspect of Luella's life and our family. Money is the only thing standing between us and a cure. Please consider donating to our fundraiser. We would really appreciate the support and help in finding a CURE!

Please Wear Purple Tomorrow - June 23
Dravet Syndrome Awareness Day!! 


Wear your purple tomorrow to raise awareness for Dravet syndrome and show support for Luella! Send me your purple pictures!! 




Tuesday, June 16, 2015

Wear Purple on Tuesday June 23rd!!

Just a reminder to wear your purple next week on Tuesday, June 23rd for Dravet Syndrome Awareness Day!! Show your support for Luella and so many others battling Dravet Syndrome! Send me pictures (email or facebook) of you in purple to add to our Purple Video at the end of the year!!


If anyone asks you what Dravet syndrome is - the short answer is: it's a severe form of epilepsy. If they want more details here are some:
  • Seizures begin in the first year of life in an otherwise typically developing infant.
  • There is currently no cure.
  • Initial seizures are most often prolonged events (status epilepticus).
  • Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy).
  • Children with Dravet syndrome do not outgrow this condition.
  • Treatment options are extremely limited.
  • Dravet syndrome patients require constant care to assure their safety due to the unpredictability of seizures as well as their inability to recognize real danger.
  • Individuals with Dravet syndrome have associated co-morbid conditions that can include: 
    • Behavior issues and developmental delays 
    • Deficits in social and learning skills 
    • Movement and balance issues 
    • Growth and nutrition issues 
    • Sleeping difficulties 
    • Chronic upper respiratory infections 
    • Sensory integration disorders 
    • Disruptions of the autonomic nervous system (which regulates things such as body temperature, sweating, and toileting)

Thursday, June 11, 2015

Our story on KDLT!

KDLT News has been so good to us this week!! I got a call last week Friday asking if I could come to the studio EARLY Monday morning for a live interview about my "a cake 4 a cure" fundraiser! I was thrilled! What a great way to get some awareness for Dravet Syndrome and help us raise some money for the Dravet Syndrome Foundation! I was there around 6:00am for a spot at 6:30. If you missed that little clip you can watch it here - http://www.kdlt.com/kdltnews-news-kdlt-news-today/Have-Your-Cake-And-Help-A-Cause-Too/33458266 I was pretty nervous going into that interview but after talking to myself the whole way to Sioux Falls and praying before going in the door - I was completely at ease in the studio!! Thank you Lord! No tongue-twist ups!

After that visit Monday morning, Sarah Blakely (the morning anchor) asked if they could come to our house to meet Luella and extend the story. I got home by 7:15am on Monday and Sarah and her camera man arrived around 9:00. Sarah asked if Luella and I could possibly do a little baking for them and I quickly got things set up. It was SO FUN! Luella definitely is my little kitchen helper! She probably helps more in the kitchen than the other kids. Of course she loves to be my little tester too!

Teaser Video
Out of all the video they took I was anxious to see how it would all come together. On the KDLT News at 5:00 they did a short little teaser for what was to come at 6:00. They featured more of my cakes here. This wasn't posted online so I just took a quick video of what was on TV to share here:


Watch on YouTube here: https://youtu.be/NjEVy379c78

The WHOLE Story
At 6:00 the story was on and they did a great job putting it all together! Luella has really enjoyed seeing herself on TV so much this week. She had the biggest grin watching herself eat that cupcake at the end!! Here is what aired on the KDLT News at 6:00 (also re-aired this morning around 6:30) and the story they wrote online also (not the greatest quality, but you get the idea):
http://www.kdlt.com/news/local-news/Minnesota-Mom-Bakes-Cakes-For-A-Cure/33505996
We kind of feel like celebrities this week!! :-) It was fun and we pray that we helped raise some awareness.

Don't Forget to get Your Tickets!!!
Only 12 days left to get your tickets to win a cake and help us find a cure! Please visit the donation site to make your donation - every $5 gets you one entry into the cake drawing! ALL the money will go to the Dravet Syndrome Foundation!! 

http://www.youcaring.com/acake4acure/