Seizure at Pipestone Pool

We thought we'd try beating the heat at the Pipestone pool tonight. Luella was decked out in her snazzy polarized sunglasses but barely made it out of the locker room before she had a seizure! She was so excited to go swimming and wanted to bring two little rubber ducks from home to swim too.  She wasn't even wet yet and we were walking in the shade of the umbrella so who knows what happens in her little brain.  It would have been 2 weeks tomorrow since her last seizure.

I sat out of the pool in the shade and held Luella while she slept. Jim, Burke and Ashlyn swam for about an hour (Ryker stayed home and had some special time with Grandpa and Grandma while he recovers from Mono). Just as the pool was closing Luella woke up a little bit and with eyes just barely open she pointed at the water and said "wimming". Poor babe!! The sweet staff at the aquatics center gave us free passes to try it again another time. They were also sad Luella didn't get to swim.

Luella was pretty much back to normal when we got home and she took her two little rubber ducks in the bathtub with her! We'll have to see how it goes the next time....

Sunglasses appear to be helping!!

Well, I didn't get a chance to post about Luella's last seizure on July 6th. We had a lot of family in town helping Jim's parents get settled in after their move. It was so hot!! On that Friday we decided to head to Rock Rapids to the pool with Jim's brother and family. Luella was only in the water about 5 minutes and had a seizure. Boo! I so wanted her to be able to enjoy the time cooling off and playing with her siblings and cousins.

Luella and her new sunglasses!!

We decided to try polarized sunglasses (recommended by other Dravet parents). I ordered a couple of pair just in time for our weekend trip to Okoboji this past weekend. What a great vacation destination for a little girl who seems to have seizures around water and sun!! It was planned though and we had the sunglasses to try and she did GREAT!!!! No seizures at all!!! Prayers answered! Luella kept her sunglasses on perfectly and swam at the lake, the campground indoor pool AND the little kiddie pool outside!! Bright, sunny and FUN!! It was great to see her enjoying herself and laughing. It was wonderful!

We plan to test the waters (HA!) and go back to the pool in Rock Rapids sometime this week to see how she does there too. I've been avoiding pools this summer for fear of seizures but it would be great if the sunglasses would continue working. We know that her Dravet Syndrome will continue changing and eventually the sunglasses might not work, but for now we are going to try to enjoy the water!!! Hope you are all keeping cool!! Let's pray for some rain soon too!

Modeling another style of polarized sunglasses.

Luella having so much fun in the water!

Luella and Ashlyn keeping cool!

Luella enjoying the beach at the lake.

"Happy Birthday America"

Luella is having a fun day celebrating the 4th of July! We were glad to hear her wake up so chipper this morning. We put her to bed last night post-ictal after having a seizure around 7:40pm. It was another strange presentation - she was semi-conscience and could respond to me a little bit at the onset but then became unresponsive. We had to give 2 doses of midazolam again. Usually after a seizure she lets out a big sigh and then sleeps but she was making little noises or grunts like she was trying to talk to us afterwards and she was restless in my arms too. I just decided to get her ready for bed and then she was still and slept until 8 this morning. It was a hot day yesterday but she was only outside for about 30 minutes and had been in for 2 hours when she had the seizure. She just keeps us on our toes always ready for the next seizure! We are so thankful that even after having a seizure she bounces back and is Luella again!! I'll leave you with her little birthday wish for America on this Independence Day!! God Bless America!

Video: Luella says "Happy Birthday America"

Gazebo Gallop (and a seizure)

Last night our hometown of Estelline, SD held its annual Gazebo Gallop - a 5K or 1 mile fun run/walk. This year they turned it into an event to support Luella and Ty (the son of another EHS Alumna who is battling Leukemia). We had a great turn out! It was so wonderful to see all of those who came to support both Luella and Ty. I want to thank all of our families and friends who were there - it meant SO MUCH to see you!

My family (parents, sisters and their babies) with us ready to walk!

 Poor little Ty couldn't be there last night as he was just admitted to the hopsital for another run of chemo! And Luella was having such a fun time running around in the Gazebo just before the start of the walk/run... and then another seizure!! Once again 2 doses of midazolam and oxygen to get her levels back up. Definitely not how I wanted to start the walk. We tucked her into the stroller and decided to do the walk anyway since she was sleeping. Two seizures this week - Monday and Friday. :(

How Luella spent the walk.

So many people have children who are sick. It doesn't seem fair that these little angels should have to suffer like they do. For whatever reason, God gave Luella to us with Dravet Syndrome. We know that there IS a reason and that God is always with us helping us along the way. We feel truly blessed to have Luella in our lives and we thank you all for your continued prayers and support!