We Wore Purple!

Monday was Purple Day for Epilepsy Awareness! (If you are viewing this post via email, you'll need to click the blog title and view the actual website to see the pictures below.)

Luella is ready for purple day!

The older kids' shirts say, "I love someone who has seizures."
Luella's shirt says, "My family loves me!"

 

Monday is PURPLE Day

Monday is Purple Day in support of Epilepsy Awareness! Wear purple to support Luella and the many others affected by epilepsy in its various forms like Luella's Dravet Syndrome!

Visit the Purple Day website.

Thanks everyone!!

A Rough Day for Little Luella

Luella and I were on the road early this morning for Sioux Falls for appointments at The Castle. She has vesicoureteral reflux, or bladder reflux, which causes her urine to back flow up to her kidneys. We discovered this early on after her first couple seizures when she was having frequent UTIs. Since then she has been taking a prophylactic antibiotic daily to help prevent a UTI. Today she was scheduled for a nuclear scan to see if the urine was still back flowing.

When we got to The Castle and got checked into her outpatient room she didn't want to get out of the stroller and said "no poke" as she held her little arms close to her. She didn't need a needle poke but she did have to get a catheter and she wasn't too happy about it. Once we got to Nuclear Medicine she was really scared and just clung to me. They had to hold her down for the test and she screamed the whole time. I was right there with her too but she wouldn't settle down. I think she was very uncomfortable with the catheter and them filling her up with fluid. Poor little thing! I was so glad when that was done!

Afterwards we waited around another hour for the pediatric urologist to see the results. He said Luella's reflux has improved. It looked to be completely resolved on the right side and the left appeared to be grade 2 reflux - she had been a pretty serious grade 4 before. So that was all good news. She will still continue to take her antibiotic and will go back in September for an ultrasound of her kidneys to make sure they are still healthy and doing okay also.

When we got home today Luella was feeling okay and playing. We took her outside to play while Jim and I talked about the day. She wanted to go down the slide with me so we went down the slide and then she wanted to be in the sandbox. I took off her shoes and set her on the seat with her feet in the sand by Ryker. Within 20 seconds she just fell over face first into the sand - having a seizure. We took her inside and after 2 doses of midazolam she came out of it.

Hard to say what triggered this one. The sand felt cold to me, Jim didn't think it did. It might have been the cool sand or the texture or maybe just a coincidence and something completely different. She had been in the sandbox just last week without any problems so yet another mystery...

Please pray that Luella doesn't start having seizures due to such simple triggers. I want her to be as "normal" of a kid as she can and having seizures at the pool and now in the sandbox are starting to hinder that "normalness" for her. It kind of scares me to have her out and about wondering "what next?"

Blessings... Laura Story

I'm sure many of you have heard the song "Blessings" by Laura Story and if you haven't you should. No matter how many times I hear this song I always end up crying. My tears are tears of heartache but also of comfort in knowing that our God is merciful and mighty. Just wanted to share this tonight. Thanks for your continued prayers!

Laura Story - “Blessings” Lyrics

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Seizure #56, No more swimming for this little peanut...

Well, we now know that Luella should not go swimming - at least not at our indoor pool here in town. We all went swimming this afternoon and within five minutes of being in the water Luella had a seizure. Last month we went swimming and she had a seizure there too but we weren't sure if the pool provoked it or something else - now we know. :-( This seizure took two doses of her rescue med to stop. Jim was ready to take her to the ER, thankfully we didn't need to.

I think it has something to do with the fluorescent lighting in there or a combination of that and the water. She was looking around the pool and once her eyes focused on the lights, the seizure started. We've been swimming there before without any problems, but with Dravet, nothing is constant. Things are always changing. That's one thing that makes this disease so frustrating!! If we could just get to a point where the meds were working and we could be "good". But you can't. We need to pray hard for a cure for Dravet. There are people out there working hard to do that. Please pray that they have the knowledge and the money they need to make it happen!!

The Dravet Syndrome Foundation (DSF) (http://www.dravetfoundation.org/) is the place to donate money to help fund research to cure Dravet.

Home Again!!!!

Luella was released from the hospital this morning!! She spent a week at the castle due to complications with RSV. Yesterday she took her entire 2 hour 15 minute nap without supplemental oxygen and did great! We wanted to see how she did during the night last night too, and she did have a couple of dips below 90% but for the majority of the night she was above 90%! You can tell just by looking at her that she is feeling better. She's been laughing and playing with the nurses the past couple of days. She has also been anxious to get out of there - asking for "shoes socks on go outside". Jim picked us up this morning and we are already home. We appreciate all the prayers! And also all the extras - food, childcare, notes, gifts, etc... Thanks so much everyone!!!

Ready to go home!!