February 2009 Archives

After nineteen blissful seizure-free days, I'm sad to report Josie had two drops this morning followed by a sudden sleepy spell. She was playing normally and then stood up, looked glassy-eyed and asked to be picked up. Brandie did, and within a minute or two she was fast asleep. Her color and breathing remained normal throughout the hour nap she wound up taking, and upon waking she was alert and in a good mood.

She's had five more drops since and has returned to the clouded, sometimes-agitated state she was in for the past four months. For every visible drop there appears to be a lot of "under the hood" activity that doesn't have a physical manifestation, but she just seems interrupted: her thoughts and conversations seem shorter, more abbreviated.

We're definitely disappointed, but grateful for the seizure-free time that she had and hopeful that her medication will be able to be adjusted to grant it to her again. The silver lining definitely seems to be that her epilepsy is treatable with medicine at all, as some 30% of cases are not. Our thanks again to everyone who has been praying for her and supporting us through this time, we appreciate it!

   

I found some time to download, process and upload the last month or so's worth of images from our camera, but ran out of organizational steam at the end so they're all in one directory for your viewing enjoyment. We'll be doing some future posts to provide more backstory soon, but the big ticket items this month (pictured here) have been Josie's continued freedom from seizures, the loss of our repatriated friends back to California and Brandie's Round the Bays walk. There are also some great photos from our friend Cari's birthday party - enjoy!

Our count of seizure free days continues and I couldn't be happier to report that we've had only one seizure in the last 7 days!  It's unbelievable.  

I feel especially elated due to the fact that we had just settled in to the realization that the next medication we were going to add would take 3 - 4 months to see any results.  Thankfully, we didn't even need to add the third medication.  After seeing Josie's neurologist on January 30th, we increased her Epilim to 8ml twice per day.  Four days later, no seizures!  I am so happy that we didn't even have to add the third medication and start trying to figure out the wean of the first medication.  I feel so blessed that it worked!  We have joined an online support group for parents with children who have Doose Syndrome and many of them have tried 9 + drugs, and are now on the ketogenic diet.  Something we weren't looking forward to but were preparing ourselves for.

We both realize it may not be permanent but our confidence builds with every day that is behind us without a seizure.  Josie seems brighter in her personality and we agree it's due to the fact that she is uninterrupted.  She can have a full conversation without seconds or minutes of her brain shorting.  She is happy and less irritable.  She is much less frustrated with day to day tasks and has been enjoying playing at home.

We're having her wear her helmet on hard surfaces or if she is going to play outside.  Who knows when we'll feel comfortable enough to let her stop doing that but she digs her helmets so it's a non issue at the moment.  The panic instinct is still ingrained in me. Jake was joking saying we would probably have Post Traumatic Stress Disorder.  I still find myself jumping if she gasps as she used to make that noise right before having a seizure.  Or if something falls to the floor because with many of her drop seizures she would have something in her hands and due to the loss of tone in all of her muscles she would drop it (and she would drop).  My cat like reflexes aren't going to know what to do now!  :)

I don't know why I feel this way but I am almost hesitant to post this good news.  Josie has only had 1 visible seizure in the last two days!!  I am elated!  I want to spin her around and bake her cupcakes and celebrate.  

We did do some celebrating of another kind today.  Josie got to wear her new helmet in the kitchen.  Josie hasn't been allowed to walk unassisted in our kitchen since October due to the fact that it's tile and too dangerous should she have a drop seizure.  I had forgotten how much time she used spend in the cabinets and drawers.  She basically ran from drawer to drawer checking out all the equipment.  She pulled all of the tupperware out of the cabinet and "made a cake".  She even ran into the counter with her new helmet and thought it was the funniest thing and kept laughing and laughing.  I stood there with my back to her for the first time in a long time, listening to her bustling with the tupperware and it felt like my feet were floating.  I wanted to dance.  It was absolute bliss being in the kitchen with her and with out most of the anxiety that usually comes along.  

I want to type here that I know it probably isn't forever and that maybe it's a fluke but you know what, I hope it is over and that we have many more carefree times in the kitchen together ahead of us.  I love you Josieaphine!