"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Sunday, March 11, 2012

March 11, 2012

Happy 2nd Birthday to my sweet baby Benjamin and my little angel Stephen. I can't believe two years have passed already. We had a nice day with family, and Ben actually got to try a tiny bit of his cake! How can he eat cake when it's loaded with sugar you ask? Well, he's finally off the Ketogenic diet. I feel as though we gave it a good run, but it had been enough. It wasn't helping the seizures, and it was only making him more and more miserable each day.

In addition to quitting the diet, his neurologist has decided to wean Ben off his Phenobarbital. We were concerned with the fact that he's on too many seizure meds at this point and we don't know what's doing what (I'm honestly not sure any of them are helping). He's had a few irritable days dealing with withdrawal symptoms, but his energy level is coming back. He's trying to pick his head up more, and he kicks his legs like crazy when he's in his bouncy seat.

He's still having somewhere in the range of 40, sometimes 50 seizures a day (a couple of those are spasms which really make me depressed). We're not sure we'll ever be able to eliminate the seizures entirely, but I'm still hopeful we'll find that magic drug.

As usual Jadyn has been so patient and loving towards her brother. She's at that age where she's starting to question everything and I'm not talking about the usual "why is the sky blue?" We pray almost every night and she's been asking some great questions about God and her brothers. Some are easy to answer like "Did God have a cake for Stephen today?" My response "Of course he did!" Others are a little more invloved like "Why did God make Ben handicapped?" I started to get medical on this one, but then I stopped and told her that Ben is a fighter. I continued to tell her that he may have some problems, but he's with us for a reason and he's going to do great things. Not sure if that's the right answer, but it's what we believe.

Here's to Ben experiencing what I'm renaming the "Terrific Twos!"