Sadly, the streak is broken......

Sad to say, just a few days after my last post, Ben had a seizure. It was another large seizure requiring Diastat but it broke almost immediately after I gave the medication. So it seems that the diet has not only reduced the number of the seizures but it may be helping to minimize the severity of the seizures as well. (I'm not sure about that and will definitely ask the Dr's next time we're at JHH).
We had made almost 5 weeks since his last seizure which is the longest Ben was seizure free in over a year. He was sick with a major sinus & ear infection and was having pretty high temps. So, although Ted and I were disappointed, we weren't surprised. We knew that Ben would probably continue to have illness related seizures. In fact Ted and I were more discouraged that Ben was sick already. He hadn't even started school yet and hadn't really been exposed to anyone so his illness was as big a shock as the seizure.
Since then, Ben has recovered from his infection and is doing really well. We were able to continue to wean his Keppra and have finally gotten off the med YEAH! It's a nasty med with miserable side effects so we're very happy to get rid of it. Ben's balance improved significantly since the med stopped and he has continued to improve his vocabulary. He's still speaking in 1-2 word sentences (mostly 1 word) but he's added quite a few more new words. He's latest fad is to bend up his arm and say muscle except he says "musk-cal". It's pretty funny. I don't know where he got it. I'm worried that he's been channel surfing from Sesame Street to WWF!
The diet has been going fairly well. We're still having our battles (mostly in the poultry food group, who hates chicken! it's so bland how can it be offensive ? but Ben hates it!). We've figured out a few favorites (peanut butter balls rule!), we've also found a great "keto mac & cheese" recipe. It's made with zucchini and it ends up being a fairly large portion. Ben really likes it so it's a winner all around. Ben also likes the keto pancakes & waffles but they are a major pain to make. Very time consuming. My friends have been helping with keto cooking sessions. They come over and we cook up batches of some of Ben's favorites. It's been a huge help to me and it makes the cooking a lot of fun. It also gives me a chance to catch up with my friends.
Ben will start school next week. Just 3 mornings a week but he'll be at his local grade school so he'll be close to the house. And he'll have all 3 of his therapists there plus 2 teachers and the school nurse. I've hired 2 UNC students to go with him. I offered this to the school and they agreed to the plan.The students will act a a teachers aide for the whole class but will assist Ben when he needs help and when he needs to go to another classroom. They'll also keep an eye on him to make sure he gets his morning snack & that he's not eating anything else. Ted and I are very glad that Ben is starting pre-school. He is pretty delayed academically and we're hopeful that once he is off the rest of his meds, he may be able to learn a lot.
I'm always amazed at the number of people who have come into Ben's life to help him. I've started writing down the names of all the people who have helped Ben at one time or another. It's wonderful to look at and it makes you realize that your not alone. I'm sure one day I'll show it to Ben.
The list is really long and I haven't even included family and friends. With the start of school, Ben's "helper" list has added 2 more teachers, 3 more therapists (plus the two who already see him) 3 UNC students, and one school nurse. Not to forget the folks who are already taking care of him (1 dietitian, 2 pharmacists (1 regular, 1 compounding), 2 eye Dr's, 4 neurologists, 1 ENT Dr, 1 pediatrician and 1 social worker). They are a group of dedicated and generous people. They've helped Ben so much and continue to improve his life and his future in many ways.
Ted and I know this and consider ourselves very blessed.
Best wishes to you and yours as you start the school year

A hundred years from now
It will not matter
What my bank account was,
The sort of house I lived in
Or the kind of car I drove

But the world may be different
Because I was important
In the life of a child