Monday, November 28, 2011

A better day :)

Today started with 2 tonic clonic seizures and a few myoclonic ones.  But as the day went on, he didn't have any more tonic clonic ones!  He really fell asleep today during his nap and he didn't have one.  :)  We noticed a lot of trembling in his hands today, so we'll need to keep an eye on that.

I've been cooking up a storm in preparation to go back to school.  I can freeze the pizza so I started by making 5 pizzas.  I got the crust done and then when I was measuring out the sauce I realized that I messed something up because I didn't have enough.  I think I forgot to add the oil to the sauce, but everything has to be so precise, I couldn't just go back and 'wing it'.  I couldn't even save the crusts because I couldn't get the sauce off completely.  I couldn't take a chance.  So I had to throw it all out.  :(  That was hard.

But I just started over and I now have 5 pizzas in the freezer.  It took me about an hour and a half to make all 5, but I think I'll get faster with time.  I also experimented with some snacks.  Who knew you could do so much with whipped egg whites?  I made some sort of bread like substance using the whipped egg whites, egg yolk, cream cheese and splenda.  It's an acquired taste, but Ben has to eat his portion with butter and I can add a bit of cinnamon to it.  He enjoyed his bite.

I also made some "sugar" cookies using coconut oil, coconut flour, eggs, and a bit of splenda.  He LOVED those.  They are about the size of a Nilla wafer and he can have one as a snack. 

Today we are praising God:
  • The dietitian told me that the cream we are using is 40%!  If I was better at math and not so overwhelmed, I probably could have figured that out on my own, but yeah!
  • We decreased his ratio to 3.5:1 so that means he can basically have 1 grape with each meal and he loved that today.
  • I'm learning about new snack options that will travel well to his Nana's house when we go back to school next week.
  • We will get his blood levels checked tomorrow to make sure we are on track.
  • He only had 2 tonic clonic seizures today!  He even got to play outside for a bit with Leeon.  :)
We are praying that:
  • His hands will not tremble tomorrow.
  • He will sleep through the night seizure free.
  • I will continue to find things to feed him that he will enjoy.
  • That we will have the wisdom to know what to do on each step of this journey.


  1. Love the good news! So very proud of you. Still Praying for complete healing and or the things you have listed :)

  2. So thankful to hear the progress...Praying for strength and healing for little Ben...Pray that the Lord will give you the wisdom, strength and patience to walk this walk...He never gives us more than we can bear and HE WILL see you through victoriously...Blessings to your family...Margaret at KVAG