200 and counting....

What a week....what a last 24 hours.  The truth is, Princess is having so many seizures, you just stop counting.  Even this morning, she just seemed to be in one continual seizing state.  I cannot even begin to describe just how helpless you feel in a moment like this. 


We ended up getting to the hospital last night (Monday) as Princess' seizures were definitely recurring on a much faster pace and we needed medical intervention to stop the seizures.  After several hours in the ER were taken to the Floor.  It was eerie to be back in the very same room of the ER where we were last year.  Not knowing if I were saying "Goodbye and I love you for the final time" last year, to this time, Princess is very coherent and is able to communicate.  Unfortunately, we spent most of the morning without connecting with a Neuro.  It was not until nearly noon that we finally had a consult and yet no rescue drugs had been administered. 


Through this journey we have come know of others battling this awful illness and the parents would share that their child would have 300 seizures a day....The number is truly unfathomable, and yet, I see now how it is possible.  Again, for us, the most we have generally counted in a day is 25.  Even with last year's event Princess was just stuck in a continuous seizure and convulsion.  My heart goes out for those that are struggling literally every waking minute and every minute of the day with seizures. 


We finally got an opportunity (over 12 hours later) to connect with the Neuro on Call. We came up with a plan to dose a rescue drug for Princess and shortly after administering the drug, we did see the burden lighten. Princess was a little more coherent and the seizure activity seemed to slow. That would only last for a quick and short three hours.  Again, the onslaught began and she seems to be having seizure upon seizure.  For example, she has had 16 in just over the last two hours.  We did elect to do another rescue drug to try to stop the seizures and those administered we have still have a few more. 


So that is our journey for today.  Please be in prayer, as you are already doing. 


As a friend reminded me, God did a miracle last year, and HE WILL DO IT AGAIN!!!  In Jesus name.