In all things God works for the good...

We just left our new family. We traveled up to Minneapolis for a three-day international Dravet conference, put on by Dravet.org. There were 200 families and many of the biggest names in Dravet there, including Dr. Dravet herself. I've never been with a group of people with whom I feel more connected. Every table of new faces we ate a meal with proved to be fruitful and an instant connection. Amazing... People from all over the world, different personalities, backgrounds, ages... All fiercely in love with their children and always searching for better things for their suffering, yet happy children.

It was heartbreaking to see the other Dravet kids there, especially the older ones. I feel hopeful for numerous reasons, but last night my heart ached so bad for my little girl that I curled up in bed with her... until she literally kicked me out. At this point, I'm actually feeling most concerned for her posture and gait, but that has also renewed my hope and passion for ABM. I told a lot of people about that method and saw many of them take a pen to their notebook, so hopefully more children will benefit from it. I also acted as a cheerleader for diamox, our wonder drug of the last year and a half.

We learned a lot about Dravet syndrome itself, and all things that go along with it, tools to deal with issues, financial and future planning.... All useful knowledge, but so densely packed into three days, that we are now physically, mentally and emotionally exhausted. Praying Nick will survive going back to work tomorrow and the rest of the week.

We made some great connections and new friends which I know will last and continue to be extremely valuable. I hope we can go to the next conference in two years.

Romans 8:28
deo gratia

With the family who live just 2 blocks from Nick's grandparents in smalltown, MN.

 



Melanie and Luella. Melanie's got a fat lip and nose from having too much fun with Grandma earlier in the day...