All about our Luella and her battle with seizures and Dravet Syndrome.
"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
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!
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!
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!
