"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

Friday, August 19, 2016

Full Leg Cast and a Seizure to Boot

What a week!! The kids and I had fun on Tuesday night "camping" in our backyard in a tent. They all get a kick out of "roughing" it and that's about as much camping as I can do! We stayed up late and watched Toy Story and woke up early to the sounds of the birds chirping! The kids all had fun on Wednesday playing outside and enjoying the nice weather. I was doing some work in the garage in the afternoon when I heard Luella start crying. She was on the trampoline with Ashlyn and Ryker and she was wailing. It's not uncommon for her to exaggerate an injury. I came out of the garage and told the kids to come in so I could figure out what happened. Luella didn't want to move so I went to get her. I carried her in the house and set her down on the bench in the kitchen and once I got a look at her knee/leg I knew something wasn't quite right. She was in a lot of pain so I called the clinic and got her right in to the on-call doctor. After a series of excruciating x-rays it was determined she had a growth plate fracture and needed to be seen by an orthopedic doctor in Sioux Falls right away. They splinted her leg to immobilize it and got her ready to go.

Jim and I opted to drive her there ourselves vs. the ambulance. The experience in Sioux Falls was a bit frustrating with lots of waiting only to be sent home to return the next morning to see the orthopedic doctor and have surgery. Sleeping on Wednesday night was a little challenging but Luella did okay and we got on our way Thursday morning.

We finally got to meet with the orthopedic surgeon and get more details as to what happened and what they could do to fix it. Basically Luella had a fracture to the growth plate above the tibia in her left leg. He was going to try to do a closed reduction (no incision) to put things back in place and then they would cast her leg. If he wasn't able to move things into the right place he would need to open up the leg and then there was the possibility of needing pins or wires to hold things in place.

I was able to walk back with her until they had her asleep. This mama was a little weepy leaving my baby back in the OR but she did great! Thankfully a closed reduction worked and they were able to get the cast on right away. And boy does she have a cast! That pink cast goes from the very top of her leg all the way down to her toes! She handled the anesthesia fine and we were able to see her after an hour or so.

After recovering awhile, meeting with home medical and getting a little walker and wheel chair we were able to be on our way. Luella impressed everyone in the hospital with her walker skills! She caught on right away! And we now have visible tracks around the house from the wheel chair! :-)

Unfortunately Luella is dealing with a fair amount of pain, especially when it's getting close to her next dose of pain meds. She was able to fall right to sleep last night and was up around 12:30 to use the bathroom (which is a MAJOR challenge). She got right back to sleep but at 3:30 woke up in a lot of pain. We gave her more pain meds then but it was taking awhile for those to kick in so I laid with her to snuggle and try to distract her from the pain. Around 4:30 she was finally settling down and I slipped out of her bed to let her sleep..... 10 minutes later she had a seizure. :-( She was really convulsing and her poor little leg was jerking so much. I was about to give her rescue meds but thankfully the seizure stopped. She slept well then until about 8:00 this morning. When she got up though she was so sore and it took awhile to move.

She's been in great spirits despite all she's been through. She did ask at bedtime last night if it was time to take off the cast!! I don't think she understands just how long she has to have it... but maybe that's a good thing! She will be in the cast for at least 6 weeks and then maybe a brace for another 2 weeks. She can not bear any weight on that leg so it'll be a long 2 months!!

Unfortunately we had to cancel our vacation plans to Duluth. We were supposed to be leaving tomorrow. That vacation involved a LOT of walking. We'll have to see if we can find something else to do instead.

Thanks for your thoughts and prayers. Just another bump in the road but we are so thankful to be dealing with this at the end of summer and not the beginning!

Luella in recovery... not wanting her picture taken!

Luella in her wheelchair with the little walker beside her.

Trying to get comfy in bed!



Tuesday, July 5, 2016

Day 122 was "The Day"

Well, tonight (Tuesday) was the end of our longest seizure-free run ever - Luella made it 122 days. Shortly after falling asleep tonight Luella had a seizure. We had a bunch of family visiting this week for Jim's parents' 50th anniversary celebration. We had several people here and we're visiting in the living room. At 9:22 her alarm began to ring and it kept going. I listened in the monitor and I could her her gasping. I'm running up the stairs praying I'm not hearing what I am hearing. Then I turn her lights on and pull her blankets back to see her eyes wide open, fixed. Gasping. Seizing. Sadness hits me as I know I will have to tell her tomorrow that we stop counting and start over again. I'm thankful that she won't remember this. She won't know that I had to give her two doses of her rescue med to stop the seizure. I wonder if she will feel any different in the morning? If her body will somehow let her know that it did happen? This was hard on me tonight. I didn't want to see this. I wanted to pretend she was healed. That it was done. That Dravet wasn't a part of our lives.... but it is and it will be. This is why we fund raise. This is why we work hard for a cure. Thank you again to everyone who helped make our "a cake 4 a cure" fundraiser a success. We appreciate all the support and more than anything we appreciate your prayers. Luella's prayer at bedtime was "to have a fun day tomorrow without any seizures." I pray that will be the case and we can once again strive to beat a record!


Friday, June 24, 2016

2016 a cake 4 a cure Winner!!

I couldn't wait to see who the winner was this year!! I had a lofty goal of $1,500 this year. Things started out slow but WOW you guys rallied and put me over the top!!


We ended up raising $1,630!!! 


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!! To see what DSF has been working on you can see some of the current research here - http://www.dravetfoundation.org/research/dsf-funded-research.

Time for the BIG announcement!!




The winner is..... Vicki Murra!!!! 
I'm so excited to make you a special cake Vicki!!! YAY!!!

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!! :-)

Here's a video of the drawing...
https://youtu.be/IuXpZuM19_A


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!!! 


Monday, June 20, 2016

Wear Your Purple on Thursday

Thursday is the 3rd Annual Dravet Syndrome Awareness Day - June 23rd! Please wear something purple and share a picture with me. We LOVE to see all the purple people out there!! Also Thursday will be the LAST day to get a chance to win a cake in my "a cake 4 a cure" fundraiser / raffle. I'm super excited to announce the winner on Friday!! Thank you to everyone who has donated!!

Wear your purple!! 


More details on a cake 4 a cure can be found on this blog post - http://littleluella.blogspot.com/2016/05/third-annual-cake-4-cure-fundraiser.html.

You can donate online herehttps://www.youcaring.com/acake4acure


Luella - 2 years ago on the 1st Dravet Day! June 24, 2014

Friday, June 17, 2016

Luella got her cake... do you want one?

Well, on Monday we celebrated Luella's 100 Days of Seizure Freedom (and we are still counting!!)!!! She of course wanted to celebrate with a cake. I decided to do a watercolor buttercream cake. She LOVED it!! And now your chance to win a fun cake made by me is winding down. Only SEVEN DAYS LEFT to get your donation in for the Dravet Syndrome Foundation and earn one entry for every $5 you donate! Sadly, I'm still far from my goal of $1,500. All the money goes directly to the Dravet Syndrome Foundation in honor of Luella to help find a CURE!! Help us celebrate her with a donation!!

More details on a cake 4 a cure can be found on this blog post - http://littleluella.blogspot.com/2016/05/third-annual-cake-4-cure-fundraiser.html.

You can donate online herehttps://www.youcaring.com/acake4acure

Luella's fun cake to celebrate 100 DAYS!!



Monday, June 13, 2016

100 Days Hooray!!

Luella is 100 DAYS SEIZURE FREE!! Luella surpassed her all time longest seizure free run of 90 days on June 3rd and we were just waiting to see if she could make it to 100 and share the exciting news with all of you!! She is excited to be celebrating today... we are honoring many of her special requests... including chicken strips and macaroni and cheese for supper tonight!! Oh... and maybe a cake too! ;-)

We are amazed and blessed at all she continues to do! Thank you so much for all your continued prayers and support!!

We are celebrating!!

Monday, May 23, 2016

THIRD ANNUAL a cake 4 a cure Fundraiser

Dravet Syndrome Awareness DayThe third annual Dravet Syndrome Awareness Day is coming up in just ONE month - on June 23rd! That means my third annual "a cake 4 a cure" raffle / fundraiser is kicking off too!! Please visit the fundraising website to make a donation. I will keep track of all donations and entries into the drawing.
https://www.youcaring.com/dravet-syndrome-foundation-573814
The donation site will close on June 23rd and a winner will be announced on June 24th! 

ALL money will be donated to the Dravet Syndrome Foundation in honor of Luella and to help find a cure! In the past 2 years we've sent over $2,500 to the Dravet Syndrome Foundation!!



Last year's winner was Angie Fick. She choose to have a cake made to help her parents celebrate their 50th wedding anniversary. I really enjoyed making this special cake!



So, how does this raffle work? Each entry into the cake drawing is $5. If you donate $50 - you will get 10 entries into the drawing. This is basically a LOCAL raffle since I will not ship a cake. I WILL deliver to the Luverne, Sioux Falls or Estelline areas OR you may pick up the cake in Luverne. If you live outside these areas and do not plan to pick up the cake, you may still donate but you will not be eligible to win the cake.

Please visit the fundraiser website to make a donation!! 


**Now for the fine print... 

1. I will only deliver to Luverne MN, Sioux Falls SD or Estelline SD areas or areas in between OR you may pick up the cake in Luverne. NOTE – If you live outside these areas, you may still donate but you will NOT be included in the raffle. If you are outside these areas and plan to pick up the cake yourself, please let me know so I can include you in the drawing.


2. The cake will be a 10" round cake (or equivalent). This would be a great sized cake for a birthday with 20-25 guests! 


3. The cake will not exceed 12 hours to make – this eliminates some of my more extravagant cakes. 


4. Cake must be “ordered” at least 4 weeks in advance. I will try to be available, although please understand that we get busy at times and may have travel planned. I would ask that you be flexible and maybe have another occasion in mind. 


If you'd like to follow Luella's Blog please visit: http://littleluella.blogspot.com/

If you'd like to learn more about Dravet Syndrome or the Dravet Syndrome Foundation, please visit: http://www.dravetfoundation.org/

To read more about Dravet Syndrome Awareness Day please visit: 
http://www.dravetfoundation.org/archives/events/dravet-syndrome-awareness-day

To find out more about my little cake biz, check out Embellished Sugar ! http://www.embellishedsugar.com/ 

Thank you!!! I can't wait to announce this year's winner!!


Please share!!

Luella on the first Dravet Syndrome Awareness Day in 2014. June 23rd is all about her!

Get your purple ready for June 23rd!