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.

Saturday, August 27, 2011

Summer Fun in ID and CA

We visited our Idaho Family for a week:
yes, curtis knows his hair is ridiculous

Dezh's special Papa


she could actually make sound come out of this trumpet!

She loved the trumpet.  I think it was a major sensory thing


Dezh was very excited about the tiger (its fake)

Then we spent a week in CA and saw some of the cousins there.  The other family of CA cousins were sick and stayed home cause they are awesome and know that Dezh would end up with a seizure if she got sick with the flu they had.  Love you guys.  CA pics:

2 of her 3 favorite boys

her fav part of the zoo was the puddle she splashed in 

maybe this was her fav part.  She did NOT want to leave this  face circle thing

watching a movie with the cousins

she really wanted to play the violin. we wouldn't let her.
(you would understand if you saw what she did to her own violin)
my best pal Becky. we finally got to meet each other's kids

kisses for papa, who is quite possibly her favorite human in the world

family sunday dinner.  i have missed these (for 3 1/2 yrs)

beautiful Dezh

Cute Dada
sisters flying.. not as cute
Handsome Uncle Richard playing with Dezh

major flower obsession.  both grandmas lost many many flowers


she LOVES swimming

she jumped off this a billion times

some of my best friends since childhood

cute lil cow girl

we got to visit grandma o.  dezh nearly destroyed her house. jk

grandparents babysat so we could go out for a double date.
My mom's face says it all :)  .  it must not have been too easy!

Great trip to ID and CA.  We had a good time.  Thank you families for having us and for making special accommodations for us and how we have to live with stupid dravet syndrome.  BTW, she had about 3 seizures on this trip all due to the heat.  I think being tired and ready for evening meds played a part in the first.  We bought a cooling vest from coolsport.  This arrived a few days into our ID visit.  This really helped.  I certainly recommend it to all DSers!


  1. It was SO SO SO fun to see you! I miss you so much. I can't wait for when you live closer so we can see you more often!

  2. Love all of the pictures. Dezh is so beautiful!