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.

Friday, May 20, 2011

Happy Big 4th Birthday lil Dezh!

Nadezhda was born May 19, 2007! That was 4 entire years ago.  I remember thinking, when she was about a month old, that there was no way I was capable of raising a baby to reach kid-age.  I figured it would be too complex and that I wasn't capable.  So far she has apparently survived my "parenting", if you can call it that!
Here is some b-day stuff we did yesterday:

we cooked waffles for breakfast
had a respite meeting (really great b-day celebration - sarcasm)
went to school
took cupcakes to classmates, they sang her happy birthday which she loved
had a nap!!
had PT (she loves her physical therapist so that really was a treat for her)
blew bubbles
went to the park
climbed trees
had pizza for dinner
sang happy birthday and blew out candles on her cupcake about a dozen times ** (her fav)
opened presents (thanks grandma and grandpa)
she got a cute outfit, hungry hippos game
she also got fake food with fake knife to cut the food
and she got goldilicious and pinkalicious dolls
she got a long bath (lately they have been just long enough to get her clean - no playing; it takes so long)
Oh and the night before her b-day we took her to dinner (more for the parents than her).  But the waiters sang her happy birthday and gave her ice cream.  She liked it  a lot!

cupcakes I brought to school.  she had an icing mustache

picking up dad after school

such a cute lil gal

riding her new unicorn doll, goldie.  drake is sniffing the doll behind her.

The best part of the night for Curtis and me was right before dinner.  Nadezhda folded her arms and said  a prayer.  It was soooooo tender.  She said "Heavenly Father, I'm thankful we got to go to the park."  We didn't tell her what to say at all.  In fact it was quite unexpected.  She said this prayer while she was getting a diaper change, right after we got home from the park.  This prayer was so sincere and out of the blue.  We love our little gal.


  1. That sounds like a fun birthday! Climbing trees always makes a special day. I'm sorry we didn't come by or bring over her present. We're not good friends these days... We'll have to do bring one on Monday when we watch the Bachelorette:)

  2. It sounds like a beautiful day for a beautiful girl!! We are glad it was so special for all of you!

  3. HAPPY, HAPPY Belated Birthday to Sweet Dez!!!!! Looooooove the video so much! She is beyond precious. So glad you all had a nice birthday day with a special birthday prayer. How fitting coming from such an angel. <3

  4. I have been missing her so much lately, I'm so glad you posted pictures and that great video of her!! That made me miss her even more though. I love how sweet and awesome and beautiful she is. Ugh I miss her!!!!