"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 4, 2015

She is showing us all!

Well, lately Luella has really been showing us all just how strong and determined she is! Today, this little lady is riding a BICYCLE WITHOUT TRAINING WHEELS! Wow!! If you had asked me during that first year or two when she was having many, many seizures if I thought she'd ever ride a bicycle I probably would have said, "I doubt it." But Luella had other plans and this past week that plan was to master riding a bicycle and she has it about perfected! Thank you Lord for gifts like these!

Video on YouTube of Luella riding a bike: https://youtu.be/TuByQ-Tpv-U

In other news, we had an IEP meeting at school last week to review some new resent testing that Luella had done after school started. She is THRIVING at school!! She has tested out of DAPE (Developmentally Adapted Physcial Education)! She has met all her goals and is right in line with what her peers are doing!! So amazing! She will still be doing OT and Speech but doesn't haven't far to go before she will met those goals as well! When school first started she was in the Special Education room for 30 minutes every day. Well, they are running out of things to work on in there! She is getting most of her work done right in the classroom so her Special Ed time will be reduced to only 20 minutes just three days a week!! How amazing is that?!? We feel SO blessed at the progress Luella has made and continues to make. She is just amazing us all by what she is accomplishing! School has been such a great thing for her and she loves it!

I tried to work will Luella all summer to write her name in title case. She fought me and just wanted to write it all caps. During the first month of school she went from writing her name like this... to this! 

And her coloring has improved from this... to this! 

We are SO grateful for the dedicated people who spend time with Luella during that day and have helped her grow so much during the first six weeks of school!

Thankfully Luella hasn't had any seizures at school although she continues to have about a seizure a month. Her last seizure was September 25th, the one before that was August 26th. We focus on the positive in that these seizures are now about every four weeks verses one a week about a year ago and almost daily back in the summer of 2011, and also that she is still showing Dravet syndrome who is boss by bouncing back so quickly and LEARNING TO RIDE A BICYCLE!!! WOOHOO!! 

Wednesday, September 16, 2015

A Make-A-Wish "Beauty" - Helping to celebrate 5,000 likes!

Just a quick post to show you the "beauty" that was all over the Make-A-Wish Minnesota's facebook page today! If you are on facebook, you've probably already seen my shares but I just had to share with those who might not see it there. I was surprised when scrolling through my facebook news feed this morning to see a beautiful little smile looking back at me! Luella helped them celebrate 5,000 facebook likes today! She was on an image on their timeline and also on their cover photo!! Thanks to the talented Jim Juhl at Myhre Studio for capturing this and other beautiful pictures of Luella!

Visit Make-A-Wish Minnesota's facebook page and give them a "like"!! They do amazing things and we are so grateful for the memories they gave our family!

Sunday, August 30, 2015

Water, water and more water!

A happy girl at WWW!
Well, it's the end of a SUPER fun weekend!! Luella set a record by being able to go to Wild Water West (a water park near us) for the first time and not have a seizure!! We've tried to go there every summer and it always ended the same way - with a seizure. Not Saturday! Luella had a fantastic time!! We all did. We started out riding the go-karts as it was a bit chilly yet to swim. Luella had a blast riding with daddy. Then we went on to swim and she did great! We spent over four hours there and Luella did it ALL - water slides, kiddie pool, wave pool, lazy river, go-karts, bumper boats and mini golf to finish it off! We were thanking God for such a wonderful time. YAY!! We celebrated with supper at Buffalo Wild Wings! That was a first too - can you believe it!? ;-)

Then Sunday.... we decide to hit the water again by going to our local "Creamery Pond". The kids had a blast and Luella had another terrific day! She spent time playing in the sand, riding the paddle boat, and swimming! After a good couple hours there we grabbed some ice cream and headed home to build up the fire pit and roast some hot dogs and make s'mores! It doesn't get much better than that! What a perfect weekend!! We thank you all for keeping Luella in your prayers. We know so many said some extra prayers after her seizure on Wednesday night. God bless you!!

She made a number "4" in the sand!

More pictures from the weekend....

Racing with daddy.

Going down the big water slide with daddy.

Bumper boats with mommy.

Playing mini golf.

Swimming with daddy!
Luella has a great daddy to take her in that cold water!!
Mommy was a bit too chilly!

Paddle boat fun.

Old Luverne fire truck near the pond.

Time for s'mores.

Saturday, August 29, 2015

Kindergarten! (and a seizure)

Luella just completed her first week of kindergarten!! How amazing is that?! On Monday she went to school with mommy for a quick one hour orientation. She had a little time with her teacher and some time playing on the playground. Tuesday was the first full day - 8:00 - 3:15. A LONG day! Daddy took her to school but she got to ride the bus home - the "real" school bus with her friends and siblings!! Our school has been so terrific about making sure Luella has the most typical school experience. Luella has a one-on-one paraprofessional with her during the day at school and she also rides the bus with Luella! It's so fun to see her running to the bus in the morning and precious to see her in the afternoon - getting off and running to me for a big hug!

Riding the BUS!!

Reading a story about epilepsy to Luella's class.
Luella didn't seem to be too tired out on Tuesday after school and she continued to play hard outside after getting home. Wednesday she was a bit more tired and a little whiny at school. I stopped in to Luella's classroom on Wednesday morning to read a book about epilepsy / seizures to the kids. Luella tried to push me out of the room! She didn't want me there! :-) She let me stay to read but I had to make sure to leave right away when I was done! She is SO independent! The kids were all very attentive to the story. I read the book Taking Seizures Disorders to School by Kim Gosselin. It is a great book to help explain seizures to younger kids. The main character in the book is Jaime but I modified the story to make it about Luella. The kids were good listeners and answered all the questions I asked after the story. I pray they don't have to see Luella having a seizure but if they do I hope the time we spent talking about seizures will have them more prepared.

After school on Wednesday I could tell Luella was more tired but she continued to play and we tried to get to bed a little earlier. She rustled around quite a bit before she finally fell asleep and then just a few minutes after falling asleep her alarm began to sound. I knew she was having a seizure. Jim and I quickly sprang into action. It's sad that this has gotten so routine for us that we barely need to speak to each other during everything... we just do what we need to do. Sadly we needed to give her three doses of midazolam again before the seizure finally stopped. This seizure was almost identical to her last seizure on July 30th. So it had been 27 days since the last one. My initial reaction was - well, two full days of school wore her out and now she is having a seizure. Jim was more optimistic and pointed out that it had been 27 days and was getting to the point when we would begin to expect her to have one. So hopefully that was all it was and school didn't play any part. We would appreciate prayers for Luella to have the best year of kindergarten without interruptions from seizures!

Everything at school is in place for her to have the best year! Before school started we trained all of the people who will be with Luella at school. She has an amazing kindergarten teacher and paraprofessional along with many other teachers and paras who will work with her throughout the day! We are so fortunate that Luella has such a great team! The majority of the day Luella will be with the rest of her class in a typical kindergarten classroom. She will spend about 30 minutes a day with her special education teacher and will also go to speech, OT and DAPE (developmental adapted physical education) at various times during the week too.

Luella and her kindergarten teacher Mrs. Dreessen. Luella and her 1:1 para Mrs. Kneip.

Luella's special headband for gym.
During the summer I was looking for a something to help protect Luella's head when she is at gym. She has gym class everyday and seizures are more likely when she is running around and playing hard. The gym floor is hard and it would be difficult for a para to be close enough to catch her in the event of a seizure there. I was happy to find the Crasche Middie headband. It is designed for figure skaters but works perfectly for Luella. It's cute and not as obvious and restrictive as a full helmet. Thankfully she is receptive to wearing it!

Remembering back to just over four years ago when we got Luella's Dravet syndrome diagnosis... I remember googling "dravet" and feeling just devastated... reading the stories about severely disabled children with Dravet. Kids who couldn't walk or talk. Kids who had feeding tubes. Kids who had hundreds of seizures a week (or more). I wasn't sure what Luella's future would be like. It was hard to not think of the worst case scenario but whatever Luella's future held, I knew God would be with us. We are SO blessed by how well Luella is doing!! Everyday I'm reminded of how different things could be - we know many other children with Dravet who aren't doing as well. We also know that things could change in an instant - any seizure could change everything, but we are so thankful to God for giving Luella the opportunities that she has!

Here are a few more pictures of Luella's first week of school!

Luella's cubby with a PURPLE crayon name tag!!

There are lots of fun play things in kindergarten.

Luella's spot at the table.

Ready for her first FULL day of school!


The whole crew ready for school!! This mama is lonely during the day!

Saturday, August 15, 2015

558 Miles

558 miles (one way) is the number of miles traveled by Luella's very special friend to get all the way to our house. Well, she is not JUST Luella's friend... she is very special to our whole family!! You might remember past posts about the organization "IR4" (I Run For). IR4 matches runners with buddies who have medical issues or special needs. The runners dedicate their miles to their buddies. We were fortunate to have Luella matched with a wonderful lady from Illinois named Sue! Sue has been such a blessing to us! Sue and Luella were matched in January 2014. Sue runs, walks, bikes and most importantly prays for Luella! Since they were matched over a year and half ago, Sue has said she wanted to find a time to come and visit us. (Find my post about getting matched with Sue here - http://littleluella.blogspot.com/2014/02/long-overdue-updates-seizures-school.html)

The board we used to track Sue's miles.
We had been keeping track of all of Sue's miles on a fun board we made. In June Sue completed 558 miles - running, walking and biking for Luella! Since her virtual journey to our house was done, it was time to do the real thing (driving of course!).

On Thursday, August 6th, Sue and her husband Jim got up super early to begin their trek to Luverne to meet Luella! They weren't sure how late they would be getting to Luverne so we planned to meet for the first time on Friday. As it turns out they made great time and were in town in time to join the kids and me for the Bank Night movie "Home" at our Historic Palace Theater on Thursday night! I saw them as soon as I found a parking spot and Luella wasted no time unbuckling and getting out of the van to greet Sue! It was SOOO sweet!! She was so excited to finally meet her "running buddy"!!

(Video of Luella meeting Sue for the first time - https://youtu.be/w5huYBC3AjM)

It was a fun movie to watch together but it was probably more fun to listen to Luella laughing throughout  the movie! It was pretty cute!

On Saturday Sue and Jim spent the day with us. There were many gifts bestowed on all the kids from them! Wow, did they get spoiled! Luella had fun showing Sue around our house and they played and played!

(Video of Luella and Sue playing a fishing game. Warning: LOTS of giggles here! - https://youtu.be/__eG7txmUec)

The day went by so fast! We visited, checked out some of the shops downtown, took a drive to see some of our great Blue Mounds State Park. We finished the evening with some homemade pizza and s'mores cupcakes. It wasn't over yet though. Sue wanted to give Luella her birthday present a little early so she could see her open it in person... Luella received the most gorgeous purple dress up gown - just like Rapunzel!! She loved it and wanted to sleep in it that night!! It was such a whirlwind day! So much love and happiness.... and a few tears as we said our goodbyes. Luella didn't understand the sadness but Sue and I did. Hard to say goodbye when you don't know when you'll meet again! Thank goodness for the internet and being able to stay connect... even though 558 miles separate us! 

Thank you Sue for your love and caring!! We are blessed by your friendship! 

Here are a few other pictures from our fun day! 

After the movie - Sue with the kids and me.
Loving having Jim and Sue visit us in Luverne!
The kids getting lots of goodies! 
SO MANY things!! 
Luella enjoyed having Jim and Sue play her fishing game with her.
Of course Luella had to play a little piano.
The beautiful early birthday present Luella got from Sue and Jim! Such a beautiful princess!
Luella and Sue! I love how Luella is holding Sue's necklace - one we gave her last year that
says "I Pray 4 Luella".
This is the last picture Sue took of Luella - standing in the window waving goodbye.
Sue posted on facebook with the caption
"Saying goodbye to a princess is very hard."
We'll miss you Sue!! 

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!