Last week, Thursday through Saturday were really good days. Carter had very few seizures and we were hopeful the medication was finally taking effect. Then Sunday came and down he went, over and over. The poor guy just couldn't seem to stay on his feet with the frequency of the drop attacks. After 3 days of significant improvement it was a little hard to watch.
We were a little nervous for Chris to go to San Diego Monday but I knew it was important so I sent him anyway. And then we were blessed. Monday evening wasn't going so well and I was so glad to get Carter to bed so the seizures would stop. And then he woke up Tuesday and was fine. Not a single observable seizure all day!!! What a gift! Rather than get my hopes up I chose to just enjoy it, and enjoy it we did. So I was pleasantly surprised to wake up this morning to a continuingly seizure free boy! We had a great day, and after our daily chiropractic adjustment we spent a bunch of time at the park and outside in the beautiful weather. We were 43 hours seizures free when he suddenly collapsed after his nap, hitting his chin on the window sill, and seizing for 30 seconds on the ground. The streak was broken. But you know what? We had a great couple of days and we'll just look forward to more of those rather than dwell on the not-so-great days.
What's next? We see the neurologist again on Friday and we'll see if they have any more ideas of a diagnosis/prognosis. We have also started studying the ketogenic diet at the urging of the neurologist as some children with refractory epilepsy (meaning they are unable to control the seizures through medication) respond very well and can become seizure free on the diet. Its extreme and requires complete commitment and it is very difficult to follow, but if the benefits outweigh the cost than it is something we should at least consider.
While we're counting blessings we are grateful that Christopher's trip to San Diego has been incredibly good professionally and we've had friends help us out while he's been gone. Not to mention the wonderful Janie who helped me sort and de-junk the playroom while Carter was feeling well so he can now safely play down there. And lastly, how gorgeous has the weather been? Winter, we're done with you, welcome spring!
