7 Days Without A Seizure

Well the good news is that Ben didn't have a seizure for 7 whole days (and 4 hours, but who's counting?) Although we are disappointed that he had a seizure last night, we are hoping that this will be a good trend. Developmentally, he continues to make great progress, pushing up on his hands, and sitting with only slight support. He's even been rolling a ball!

So Far So Good

Ben has been out of ketosis for about 5 days now. He is doing really well. He is moving around - in circles on the floor, and pushing himself backwards. He is sleeping through the night again. He hasn't had a seizure in almost 6 days - a record! We are cautiously optimistic. I say cautiously because, well, to be honest, we are afraid to even talk about it. His doctors say there is no relationship between ending the diet and the lack of seizures. But they can't tell me why they think that. We'll just have to wait and see. In any case, I did want to share the good news because it is GREAT news :)

Weaning from the Ketogenic Diet

Well, it's time to start the weaning process from the ketogenic diet. It has not helped reduce the frequency with which Ben has seizures. In fact, he's now having anywhere from 4-6 seizures a week. Before we started the diet, he was consistenly having only 2 a week. Curiously, every Wednesday and Saturday, like clockwork. It has become much less predictable since starting the diet. We are disappointed that yet another intervention has not worked for Ben. But he continues to make progress developmentally, and that is really good news. As his Nana says, "Ben is just giving us more time to enjoy all the baby stages". Good ol' Nana!

Hangin' on a beautiful sunny Sunday afternoon

Ben's loving big sister

While Ben was having a seizure last night, Chloe helped me comfort him. Of course we were all a little anxious during that time. The next morning Chloe woke up and said, "I wanna see Ben!". Then she put her cheek next to his and said, "See, Mommy, my cheek is sending my love to Ben's cheek".

Giving Acupuncture A Try

Ben went to see a new doctor yesterday - Dr. Liu, a well-respected and effective acupuncturist. I found out about him from the mother of another child who had seizures. Her son had been having seizures for 2.5 years when they somehow found Dr. Liu. After weekly visits for about 6 weeks, her son stopped having seizures. He is now 4 and has been seizure-free ever since. They now go every couple of months.

Ben lay on the examination table, babbling away to Dr. Liu while he inserted needles in his ankles and wrists, and then his head. He didn't mind them at all, and seemed to feel right at home. The whole visit took about 30 minutes.

I have high hopes for Dr. Liu. Like he says, drugs haven't worked for Ben, so let's see what acupuncture can do.

Ben in action

Unfortunately, the ketogenic diet does not seem to be working for Ben. He continues to have 2-3 seizures a week. We still have about two weeks to go before the doctors feel like we have given it a fair shot. So we're still hoping for a miracle.

In the meantime, he is continuing to improve with his movements. He is sitting up much better and is frustrated when he can't move. That's a great sign - it means that he's motivated to move! Here is a series of images that shows him sitting, then falling over, then getting his hands out all by himself. We were so happy for him! It's the beginning of moving around independently and we can't wait to see what he does next!!

Toddler tidbits

Ben's 3-year-old cousin Braeden is served scallops for dinner. He doesn't want them. His mom says, "Braeden, why don't you want scallops tonight? You love scallops!". Braeden says, "Mooom, don't you know I change two times a day?"

Ben's sister Chloe is transitioning to a big girl bed. Yesterday, I had a hard time keeping her in her bed for naptime. After many delays and trips to the bathroom for one last poop, I said, "Ok, Chloe, let's try one more time. Please put your diaper on and get into your bed." Chloe then proceeded to give me two choices: She will put her diaper on and get into MY bed, or she will NOT put her diaper on and get into HER bed. "Mommy, those are your options. What one do you want?" When did I become the one being given options?! Hey, I'm the boss, right? Right?

Ben's learning new moves

Despite some recent setbacks in the frequency of Ben's seizures (he's had 5 in the last 6 days), he is progressing physically. Peggy has been teaching him some new moves and I'm excited to watch him start using them. He pushes way up on his hands now - as high as he can go - and can hold it for up to a minute, it seems (although I've never timed him, hey that's an idea, let's see how intense I can get catching all of his progress ;)

He is smiling and reaching and talking and sitting up in his high chair. He's rolling and rolling and rolling. The only one who can truly get a belly laugh is still daddy :) He loves his daddy.