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.

Tuesday, July 12, 2011

The Actual Dance Recital

The dance recital was as cute as the dress rehearsal.  She tried to walk off the front of the stage again but I caught her in time to prevent her falling.  She tried to do the dance somewhat.  Also, the class had learned  two dances for the recital.  She got them mixed up during part of it and put her hand to her brow as if looking for her teddy bear.  It was cute and silly.  I really liked that she held her hand there for about 20 seconds waiting for her teacher (who was dancing off the side of the stage) to do the same.  SO SILLY!
There was a moment during her recital that she looked to the right and started to make a face like she was tasting something disgusting.  It looked quite a lot like seizure activity.  There was another moment when she paused and was so still that I thought she was about to go into a big ol seizure and fall to the ground.  I nearly ran out onto the stage but decided to stay put for another second just to see what she was doing.   I am glad I did because she carried on just fine.  It was a beautiful night!  (Curtis wasn't there because he had food poisoning, btw.  We spent $22 on tickets for nothing.  Curtis stayed home in bed and I stayed back stage with Dezh in case of a seizure.  oh well.)

pic taken by Dezh.  I let her play with camera to keep her entertained

Dezh's self-portrait

catching bubbles

blowing bubbles

such a beautiful girl

more bubbles

she thought she finally had a moment to blow bubbles without sharing

she actually did share her bubbles with one lil kid though.  so proud of her

but then kids swarmed around her

so she ran away from all of them to blow bubbles in peace again

i tried to make her pose with her bear but she wanted nothing to do with it