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.

Early Issues

Days 2-6 of Nadezhda's life: Jaundice - The Bilibug
I held her while we both slept for 3 hours that first night and I sweat all over her.  We woke up cold and damp.  We got dried off and fed and went back to sleep for another 4 hours.  The nurses brought her in and said it was time to feed her although she wasn't acting to hungry.  I wondered if she was just going to be a deep sleeper or if it was concerning that she just wanted to sleep.
I remember my Dad being concerned the next morning that she just wanted to sleep and didn't cry or eat much.  Later that day, my mother-in-law and I both looked at her and said she had jaundice.  Sure enough the nurse's test showed that she did.  This explained the sleeping and not eating.  We stayed in the hospital for another day while they kept an eye on her.  After we were discharged from the hospital we had instructions to feed her every 2.5 to 3 hours, even through the night.  Also we were instructed to have her spend some time in only her diaper by the window to get some light onto her.  This helps get the bilirubin levels down.
For the next four mornings we also had to take her back to the hospital to get a heel prick to check bilirubin levels.  By her second heel prick (on about the 4th day of her lil life) she was at a high bilirubin level and was put on bili-lights.  She looked like a little glow worm  After about 3 days of the bili-lights she was back to a healthy skin color and had no more lights attached to her.
A new mom + breast feeding + thinking your baby HAS to burp after every feeding + thinking diapers had to be put on perfectly straight + required feedings every 3 hours = NO SLEEP EVER!!!  Wowsers that was tiring.  But it only lasted a bit, thankfully.
hooked up to the bili-light pad

laying on the bili-light pad


lights off, watching the little worm glow
See the resemblance


















Sleep and lack of sleep
After Nadezhda's jaundice was gone, she was very used to waking up every three hours for a feeding.  Arg!!  I was so exhausted from this.  But by 3 months old she actually started sleeping for 7-9 hours at a time.  This was so blessed!!  Of course this only lasted a couple weeks because she caught a cold and started waking up so often again.
When she was 7 months she was waking up every couple hours and it was driving me crazy.  I remember on New Year's Eve she woke up every hour on the hour and I had had ENOUGH!!  We started that "cry yourself to sleep" thing with just comfort, no feedings (except once or so during the night).  With in 3 nights she was back to sleeping through the night again and I was feeling a bit more sane!




Helmet:  Old Blog's Helmet Post:  Posted on 3/18/08

So here is the little helmet. Nadezhda has what is called Plagiocephaly. It just means that she has a crooked head and it isn't fixing itself because she won't sit up much or creep around much. (She is pretty slow that way but she IS talking!) So, she doesn't really love it but after we go through the ordeal of getting the helmet on she is fine. When she sees herself in the mirror, she smiles and pats her head. And occasionally she will hit stuff on her head because it makes a cool noise and feels different. I'll have to post later about the Helmet Party. Our awesome neighbors came over wearing helmets to support the kiddo.


















A Few Words On Her Development:
4 months (ish) - could roll over
5 months - could hold head up on own (could hold up head on own at 4 months but still bobbly)
7 months - could sit up with support
8 months - could speak: Dada, Dog, Ball
10 months - could sit with out support
11 months - could scoot to get around
11 months or 1 year - could pull to stand
1 year - could crawl
1 3/4 years - could walk