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.

Monday, July 18, 2011

Our Blog COULD WIN an IPAD for Dezh!!

Hi Friends - I feel like I am turning into a beggar on the side of the road because I am back asking for more help! A fellow Dravet Syndrome Mom nominated our blog to win an ipad and special needs apps to help Dezh develop cognitively and in fine motor skills.  This mom has one for her son and has noticed some improvements in him.  Also another DS mom that I am close with says hers has been a miracle for their family!  I want that for our family.  If we get 300 votes in the next week and a half or so we could WIN one with the apps included. WTF!?!! That would be pretty fantastic. So, here I am asking for more help from you. Thank you and Sorry. Here is the voting page:https://www.facebook.com/home.​php?sk=question&id=17037888302​9358  .  I think you just click on it.  Also, a friend of mine ( another DS mom) has a blog that has also been nominated.  She deserves this More than we do so perhaps you could click on her blog too??  It is called Our Life At This Moment.  Thanks!

Tuesday, July 12, 2011

A GOOD SUMMER HAIRCUT!

Dezh got a short haircut to help her keep cool this summer.  It has been very nice and easy to deal with.  It is also really adorable.  Take a look:



i guess she got bored







isn't she beautiful!!??

Playing with Friends

This was one of the first hot days of summer!  I love summer.  I love being outside.  So does Dezh.  Tooooooo bad the heat can kill her.  We went to our friend Mallory's house to play.  And because she is a very understanding friend, we got out the sprinkler and the kiddie pool even though all the kids were fully dressed.  Dezh loved it.  The kids played in the water for an hour while Mal and I chatted.  What a great day!

Mal and Paisley with Dezh running around in the background

soggy, grassy Dezh

Paisley and Sage sharing a trike

Dezh sitting on the sprinkler!!

hehe

my fav pic of the day:  Sage fell of the trike and kinda got stuck.
  It was funnier that he was only wearing a diaper.

All the kids ended up wearing just their soggy diapers by the end of the day

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