Saturday, January 12, 2013


Ben is doing so good!

He hasn't had an afternoon nap in weeks and his first three days back to school this week were a success!
  • He's eaten his lunch in a timely fashion without *much* complaining. 
  • He's not requested a nap and class naps are finished too. 
  • He even has enough energy to do a little 'homework' with me after school. 
And then he crashes hard...he's irritable, grouchy, teary, and fights to stay awake until bedtime at 7:00.  It kinda reminds me of when he was about two and the "bewitching" hour of 5:00.  Yuck, but we will get there.  The improvement we've seen so far is tremendous!

Since we have gotten rid of all afternoon meds, we are able to give him his evening dose of meds a bit earlier.  This has helped (or maybe lowering the meds too) with our nighttime sleeping issues.  Can you believe that Ben has slept in his own bed for more than a week?  He still wakes up, but he's not staying awake.  I think that as we continue to reduce meds, this will improve as well. 

We start weaning the morning dose of clobazam (onfi) this week.  I'm so excited to see how less meds in his morning dose will help him.  It will take us two weeks to be off the morning dose and then we take a weaning break for two weeks and then we'll tackle the evening dose.  (I get so excited just thinking about it all!)

We got his blood work back from the most recent draw and his white blood cell count is still low, but appears to be holding steady.  His potassium level is low and his triglycerides level is approaching the very high level.  Our dietitian has suggested another ratio decrease for him.  It's overwhelming because they have said so many times to only make one change at a time and we are in the middle of a med wean.  Although we would LOVE to jump into a lower ratio again, if he were to have a seizure we would be back to not knowing if it were the med wean or the diet change.  So we've decided to hold steady until we are finished with onfi. 

That means we will most likely tackle the diet next - and that makes us all very happy.

I haven't created any new meals lately.  He has gotten to the point where he just wants 'normal' food.  He doesn't want me to make him "something special".  Those cookies he loved at Thanksgiving, he refused at Christmas. 

So most meals are now pieces of turkey, cheese, peanuts, and oil.  He takes a lot of oil.  And some days, it really causes some tough tummy troubles for him.  But every meal we get through is one less meal we will ever have to endure on the diet.  This will come to an end for him.  I have to stay focused on that. 

Thanks for reading through all of this...and for supporting us on this journey.  2013 has great things in store for Ben, I just believe it!


  1. Man what an exciting time. It's like the little engine that month, two months, three, now a year without a seizure. Praise the Lord! Praying for you guys as you wean meds and try new things out. What a blessing each victory is! You guys are still routinely on our prayer list! Go Team Ben!
    The Thompsons

  2. so, so, so happy that you have come so very far in this journey. I am so very proud of you all! :-)