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, September 12, 2011

Same ol' Us but New Blog Name and Address

No making fun...  I know our blog address is ridiculously long as is the title of our blog, not to mention the address and title aren't even the same thing!  I know this is really silly.  I feel a bit sheepish every time I mention the blog to someone and they ask if they can have the address because, naturally, it is SO long that I can't remember the stinkin address.
So, because of the ridiculosity of this situation I will be changing to a new blog very soon!  It will be doitfordezh.com.  Do It For Dezh is going to be our (um.. I don't know what to call it) theme or slogan.  Dorky but doable (there I go with D alliterations again).  It's not just going to be for our blog.  We've also made an email address with the same name:  doitfordezh@gmail.com.  We are also going to use it for any of our fundraising for research on a specific aspect of DS.  
I know someone is going to read it all smashed together with the word ford in the middle and think it has something to do with ford trucks, but it doesn't.  So don't make fun of me for the new blog name or email address either.  But, can you believe it, this time we will be consistent!  I like that!  And at least this one I can remember AND spell!  So, very soon, please join me at doitfordezh.com for a new (and unimproved) blog about the same old stuff.  Thanks for you support!

Friday, September 09, 2011

35 Days! WhAT !??!!

Tomorrow, September 10th, marks 35 seizure free days!  I am not entirely sure why her seizures have disappeared and, sadly, I am sure that they will return in time but I believe that this has something to do with our new seizure dog.  We thought we would be training the dog to alert and respond to her seizures right now, but apparently this dog is a seizure-repelling dog rather than a regular scenting out and respond to the seizures type of dog.  I am excited to write more about the new pup a bit later.  But until then, just know that we are happily seizure free!!

Tuesday, September 06, 2011

Feeling so Sad for Her

Another Dravet kid died.  It was just a few days ago.  His name was Tristan.  He was the same age as Dezh.  He died because he wandered off and jumped or fell into a neighbors pool.
I can't imagine the pain his mom is feeling right now.  I feel sick for her.  She had a fellow DS mom post a letter to all of us DSers on our FB group about what happened.  The part that really stuck out to me was that she had always dreaded writing that letter telling everyone that he was gone.  I feel sick at the thought of life without Dezh, even though life with her is crazy and frustrating a lot.  It is more than wonderful at times too, which makes up for the hard crap.
I was just pondering...  Dezh also enjoys wandering off, or wandering where ever she pleases.  Although she is super ataxic she is a speedy, secret ninja.  She will also jump into any body of water with or without her water wings or life jacket on, and certainly without hesitation.  She can't swim and even if the water is shallow where she can touch, she doesn't stand up to catch her breath.  That is scary.
Thankfully these two hobbies of hers (wandering and swimming) have never occurred in this order or I KNOW we would be feeling the exact same heartache right now.  My heart goes out to Tristan's family, but at the same time, my heart is tucked in bed and fast asleep right next to the most precious child in the world.

Monday, September 05, 2011

Tinkle on the Potty

Dezh has been begging to sit on the potty this past week.  The first time she asked I said no because it seems like every month or so she asks then just sits there for a long while to avoid nap time or bed time.  But the next day she asked again.  So for several days in a row she asked and I helped her sit on her little tinker bell toilet.  On about the third day she actually tinkled a little bit in the toilet.  Then when I put her diaper back on her she peed a lot, but at least it is progress. When I told her school teacher about it, she informed me that Dezh had gone in the potty earlier that week at school too!  So cool.