It has been 4 days since Ben had his last tonic clonic seizure. Yipee!!! :)
We've had 4 day stretches before. When my parents were here visiting in October, we reached a good dosage of clobazam and had 4 days of no seizure activity at all!
We had another 4 days of freedom from seizure activity when we first returned from the hospital after starting the keto diet. (3 days while in the hospital and 1 day at home).
So we are really hoping that we can make it 5 days of no tonic clonic activity! That would be wonderful!
We have seen a big improvement with the myoclonic and drops as well. He's had about 5 or 6 moments today - sometimes it's a noticeable jerk, others it's the shaky hands, mouth, and eyes. But this is a big improvement from even just a few days ago. :)
We have added back clonazapam (he takes it 3 times a day). We took him off of this when he started clobazam (from Canada). So it'll be interesting to see how this all works out. Our history with this drug is that he seems to build a tolerance for it and it stops working. We've used this drug a lot actually in the past as a "rescue" med of sorts to stop clusters. I think if we can keep having good results then we will know that it's the diet that's working and not just a 'honeymoon' from the clonazapam.
We go back to the doctor on the 14th so we'll have to see what the doctor recommends. We are hoping that we can wean. This drug seems to give him trouble staying asleep at night. I can tell we are really getting close to having a seizure free day. I can't wait!
Leeon and I got to go on a little Santa shopping trip/date this afternoon. This was the first time we have enjoyed a meal together since before November 14th. It was great to be able to look at each other and conversate instead of focusing on whether Ben has eaten every crumb and if he scraped enough of the butter off the plate or not. When we eat as a family, we tend to eat quickly because Ben's portion is so small, he gets upset that he can't more if we are still eating.
The other day I was eating some string beans and Ben saw them. He HATES these. Before the diet, we'd have the old "you are going to try some before you get up from the table" standoff. But on this particular day, he said, "Ok I'm gonna try one of those things. I promise with my whole heart that I'm gonna like it. Can I have one?" Augh! I had to say no. :(
But we are so thankful...we have come so far in just one week. Last week I was scared of the future and unsure how we were going to make it through. But tonight, we are weary and cautiously optimistic, but at the same time rejoicing about the good that is happening right now.
Leeon and I were talking about how blessed we are to have such wonderful friends and family members. They have organized a t-shirt sale, bracelet sale, and a night at the local Chick-fil-A. Wow! We don't even know how to respond to such an outpouring of love except to say, "Thank you!". I know there has been a lot of work that has gone into this effort and we are very appreciative. The funds that have been raised are being used to help pay for Ben's medical care and it's making a big difference. Wow - I just can't get over it.
We received another blessing today from Ben's old school. Last year he was enrolled 2 days a week at First Christian Day School. We loved our experience there. His teacher, Mrs. Andrea was amazing and he blossomed so much while in her class. He was even singing a song about the planets and couting to 100 by 10's. We loved the early morning care he recieved from Mrs. Terri. She was always so pleasant and welcoming to the kids early in the morning. We had enrolled him again for this year and kept hoping all summer long that he'd be well enough to attend. It soon became apparant that he wouldn't be able to attend at all. They gladly refunded our tuition payment as well as our school supply fee and told us that they would be praying for him. Today we received a very nice letter from them telling us that they have been praying for him and they enclosed a refund check for our enrollment fee (the non-refundable one) we paid last spring. They said that they are hoping he'll be able to enroll soon. What an amazing organization!
These are just two examples of the love and support that have been shown to us these past few months. We really feel that these acts, along with the cards and prayer support, are just God's hand of grace and mercy being extended to us. So, thank you. Whatever your role has been in being used by God to encourage us - please know that we are deeply touched by your generosity and support.