Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Wednesday, June 08, 2011

Dance Rehersal Last Tuesday

Dezh's dance rehersal, with her lil dance class friends, was Tuesday night.  Last year's rehearsal and recital were fun and simple because her performance was the very first one and we were able to leave directly after.  This one was ANNOYINGly Frustrating!  She had two dances in this recital.  Her first dance was about the 15th dance down the line and her second one was about 20 dances after that!  We had to get there early and then wait for nearly an hour.  Ya.... 4 year olds are NOT good at that.  Add special needs on top of it and waiting is extra, super NOT a fun time.
Anyway, we ended up not even staying for the second dance she was supposed to be in.  It was already 8 pm when she finished her first dance and we would have had to wait almost another hour for her to get to do her second dance.  Obviously we took her home to bed.  Staying up past bed time + a seizure disorder = seizures,  so we decided a lil ballet dance wasn't worth it.  No seizures happened btw.
Their dance was so cute though.  While the girls were waiting for the stage lights to turn on, Dezh totally started to run toward the edge of the stage.  Thankfully her teacher grabbed her.  NO sense of danger!  Ok, here are pics from the dance rehearsal  (I have a cute video too but the file is too big to upload):

oh so cute

Dad and Dezh chilaxing with bubbles

thankfully another mom brought some bubbles which occupied Dezh for 15 minutes!

getting bored.. even of bubbles, yikes

I let Dezh play with the camera because she was sooo bored.  This is her self portrait.


  1. She's SO cute in her little dance outfit!!!

  2. Cutest little dancer ever! Has Drake tried on that dress? :)