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, March 28, 2011

Our Purple Day!!


Purple Day was lovely for us.  It began with Dezh not wanting to change out of her UK jammies (with good reason, the Cats are going all the way!) which are blue and white.  Finally we got her in ALL purple, except the pink tennis shoes she really wanted to wear.  I wore purple too, including a sequin headband.  Curtis had to go to the dental lab and wore blue scrubs. (I suggested that he put on my purple shirt under his pink scrubs and the purple would just peak out the v-neck and it would be sooo cute!  He didn't love that idea.)  Too bad he didn't have those great purple scrubs like Leanne and Isaac!!
Although Dezh had had a bit of a fever throughout the weekend we decided to get out on Saturday while Curtis was studying.  She was on Klonopin for most of the weekend (doctors orders) to protect her from having seizures with the fever, so she looks pretty out-of-it in most of the pics we took.
We went to the mall and got Dezh's ear's pierced!  She LOVES earrings and has been asking for them for a long time.  I explained that it would hurt but she just looked around cautiously.  She stiffened up when they actually pierced her ears, and whimpered a bit, but as soon as she saw herself in the mirror she was VERY HAPPY!  Of course we got PURPLE earrings!  Oh she is so cute!!!  I am nervous that perhaps I made the wrong decision.  I wonder if she will get infected or want to pull on them for the sensation.  If such things become a problem we will take the earrings out but right now she is hardly touching them and loves to look at them.  I think it has made her happier! YEAH!


I would really, really, really like to thank my sweet friends who actually dressed up on Purple Day to support my daughter and other people they know with epilepsy as well.  Thank you.

Cousin Kate for Purple Day
Chelsey and Kaelyn for Purple Day
Kaelyn's Purple Toes
Nicole, my ol room mate's, kids for Purple Day
Isaac and Leanne for Purple Day
And to any of you friends who don't want your pic on my blog, just let me know, and I will take it down asap.  I just loved the pictures.  I felt all warm and tingly inside when I saw these pics!!

AS FOR THE WINNER OF MY LIL PURPLE DAY CONTEST.... I THINK YOU ALL WON!  SO GIVE ME A BIT AND I WILL MAKE SOMETHING VERY LOVELY FOR ALL OF YOU!

4 comments:

  1. I LOVE all your purple day photos! The earrings are adorable! Melorah wants hers done, I think we may do that for her birthday in August. :)

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  2. Just found you and your blog online (lots of time nursing allows for random blog hopping...). Just wanna say...you are a person that I just immediately and instantaneously found myself loving--you know liking more than just your average person that crosses your life path. I adore conversations with you. It's like getting pinky finger promises that life will be ok and good and yucky too, but let's hug and smile and do our best with it. Just really appreciate you and your twinkly eyes and your you-ness.

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  3. And also...I TOTALLY want you to have a baby Sonic. You really should. The most awesome kid ever. I love it.

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  4. love all the pictures! hope to see you guys next weekend!

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