Wednesday, 2 May 2012

Steady on...

You know the saying  "You don't know what you've got till it's gone"? Well sometimes you don't know what you've missed till you get it back. It's been 5 days since we started Chloe on Sabril (1 tsp, twice a day) and with the exception of a minute episode Sunday morning Chloe has been spasm free for 4.5 days YAY! Not only that but Chloe is almost back to her old self, babbling, screeching and blowing kisses like crazy. We're so happy to have our little girl back. Waking up to her babbling in the mornings or when she wakes up playfully is such a blessing.

Tomorrow we up her medication to 1 1/2 tps and continue for 5 days then up it again to 2 tsp. It'll be interesting to see how the amount change will affect her. Not since she was a newborn have I seen her sleep as much as she has the past 5 days, even falling asleep in her play pen (which she barely plays in) though yesterday and today she's napped more normally. She's also able to spend more time in her Jolly Jumper, which I think she's missed.

Sabril is basically to allowing her brain a bit of a break from the spasms (which can cause all kinds of havoc if left untreated) and allowing her brain the time/a chance to rewire itself around whatever is misfiring, bringing it to where it should be. Her next EEG is scheduled for May 16th at 10:30am (which was her original EEG date) at CHEO then we'll meet with her Neurologist, Dr. Sell, later that afternoon. Lord willing the tests will show improvement or better yet no more spasms. Sometime within the next 3 months Chloe will have to undergo a MRI just to make sure there's no underlying conditions. This one makes me a bit nervous only because she'll be sedated for this but the neurology staff at CHEO are absolutely amazing so I'm sure it's just Mommy-nerves.


  1. What a little sweetheart! Love the video. Thank the Lord that something is able to be done for her and we will pray that he continues to heal!

  2. So glad to hear things are getting better. Praise God

  3. It's true, I had gotten used to how quiet Chloe had become. I'm so thankful to have my little girl back.

  4. what a gift that GOd moved you to the Ottawa area. CHEO is a fantastic hospital and beats driving to sick kids!! you are blessed and a whole lot of little blessings make a big one. thanks for sharing.j9