"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 23, 2016

She's SEVEN !

We just wrapped up an amazing week celebrating our amazing Little Luella! It's hard to believe she is SEVEN!! She's actually not so "little" anymore! <sniff, sniff>

On Sunday - October 16th, Luella celebrated her birthday with her friends and a fun swimming party! The girls made a special beaded bracelet with a pretty silver sea charm to take home. We had strawberry cake with cream cheese frosting at the request of the birthday girl! Luella got many fun gifts. It was a super fun party topped off with about an hour of swimming! (Seizure-FREE swimming!!) Luella also got to bring a special treat to school on Wednesday (since there wasn't school Thurs or Fri). Then a trip to the farm to celebrate on Thursday and finally on Friday, October 21st - her ACTUAL birthday... supper at Pizza Ranch and then off to see the firemen's movie "The BFG"! Oh and the firemen let her climb up and honk the horn on the fire truck too!! It was an amazing week celebrating our amazing Luella!!

Luella has been on a roll again with seizure-free days.... we are currently counting at 52 days!! She is also doing great and walking all over the place without even using a walker anymore! We'll be checking in with her orthopedic doctor on Monday but we anticipate hearing that everything is healing up great. Hopefully getting to ride the bus to/from school again will be on the agenda this week too!!

I'll leave you with a few birthday week pictures... More pictures can be seen online here: https://goo.gl/photos/8rimWY1M5fvDF38H9

The little mermaid herself!

Having fun swimming!

A cozy mermaid blanket from mommy and daddy!

A birthday funfetti donut for breakfast!

She's SEVEN!!

Thursday, September 29, 2016

Luella: The Speech and OT Graduate

We had Luella's IEP meeting on Tuesday and it went SO well!! Luella graduated from Speech and OT!! There's just no need to continue with the therapies since she is doing it all!! Another big highlight is that she will not be visiting her special education teacher as much. She was going 3 times a week for 20 minutes and that has been cut back to one 20 minute session a MONTH! Luella is getting all her work done in the classroom right along side her peers so there just wasn't a need to have that extra time to work on things. We couldn't be more thrilled with all the progress Luella has made. She is doing amazing things and we pray that she can continue on down this path.

The team at school said that if at anytime we feel like she needs some extra help again... they are just right there, willing to step in! We are so fortunate to be in such an amazing school district. I've said it before, but so many parents dread those IEP meetings, feeling they need to fight for the things their child needs, but we have never been in that situation. Everyone cares so deeply about Luella and her success! Blessed!!

It was party day for Luella today!! Celebrating the end of Speech and OT! Awesome Job Luella!!

Wednesday, September 21, 2016

That Cast is OFF!! Wheelchair / Walker will be sticking around...

Luella was SOOO excited to get her cast OFF today!! She tolerated that cast much better than I would have these last 5 weeks! It was great that she only had to have it for 5 weeks and not the 6-8 they originally told us. Unfortunately riding bike and running around with friends will still have to wait another month or so. She'll continue to use her wheelchair and walker as she gradually transitions to bearing weight on that leg. She did not need to have a brace or anything on her leg! Her doctor said that kids typically heal much faster than adults and, while her leg isn't completely healed, having more range of movement and gradually bearing weight will allow her to heal up over the next several weeks. Her x-rays today looked great! She will go back to the doctor on October 24th for follow-up x-rays and we hope she will be walking completely on her own by then!

Luella's cast was so beautifully decorated. She did some doodling (as did I) and when school started she brought a baggie of permanent markers for her friends to draw pictures or write their name. We had to take some pictures of her cast this morning to remember all those fun doodlings!

Getting her cast off was a breeze! The lady that took her cast off said she's had 12 year olds crying while getting it cut off, but Luella was super brave and did great!!

Ear protection from the loud saw... actually it wasn't that loud... I think more so the kids don't get worried. Maybe I should have been the one wearing them!! I was WAY more nervous than Luella was!

Starting to cut.

Working through the layers.


Luella is looking forward to a nice long bath tonight!!! :-)

Saturday, September 3, 2016

Bedtime Seizure

As you tuck your little one into bed you shouldn't have to worry about a seizure gripping their little body and taking their breath away. You shouldn't have to listen to that same little one moments earlier praying to God to keep her safe and to take her seizures away. We are not guaranteed a perfect life in this lifetime... free from the pains of the world. Only when we are with our Father in Heaven can we be free of these worries and fears and all we can do in the meantime is just trust that God's will be done.

Therefore do not throw away your confidence, which has a great reward. For you have need of endurance, so that when you have done the WILL OF GOD you may receive what is promised. 

                                                             Hebrews 10:35-36

Last night literally just minutes after I left Luella's room, a nasty seizure gripped her and took her breath away. I prayed and just rubbed and rubbed her chest and back to stimulate a breath. Thankfully she did take a breath but she was struggling and the seizure wasn't stopping. We put the oxygen on her and after 2 doses of midazolam the seizure finally did stop. After several more minutes her breathing returned to normal and she slept the rest of the night peacefully.

This morning Jim got Luella up and ready for the day while I got ready. I asked him if he told her about the seizure. He hadn't. She was perky, happy, and anxious for the day. She didn't know about the scary seizure. We decided not to tell her. She has already started worrying about seizures herself... sometimes wanting us to be with her while she's brushing her teeth or just a room away... saying "but what if I have a seizure?" We assure her that we are always close enough to hear her and are still keeping a close eye on her. We don't want her to fear going to sleep at night. Some kids are scared of the dark, Luella isn't. No kid should have to be scared of a seizure after falling asleep.

It's been just over 2 weeks since her last seizure - the night she got her cast. We are praying this pattern won't continue and we can once again enjoy longer seizure-free stretches, especially as school is starting in just a couple days. This little lady is going to be in 1st grade!! Please pray for a great year of school and fewer seizures. Love and thanks to you all!

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...

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