A long and winding road........

It's been a month since we got back from John's Hopkins and since my last post. I can't believe how fast time is going even though it's the dreary dead of winter. I can't imagine how fast the summer months will go once we have some fun activities added into our already busy schedule.

"Seizures are what my body does when my brain throws a temper tantrum"

Since we got back from JHH we increased Ben's depakote to 250 mg 3 x a day.
We made the change on a Tues & Ben had a seizure on Thurs, 2 days later. We held tight because we thought that there maybe a lag time between the dose increase and the therapeutic effect. Ben then went 3 weeks without a seizure and we were very excited because we were hopeful that we'd hit the magic combination of meds & diet. Then of course Ben got the flu and ended up having 2 seizures in one day. We told the JHH team but will keep the meds as they are for now because they never really get excited about febrile seizures. Ben is almost but not quite back up to his full dose of Depakote. While that's a little depressing, his mood is definitely better now that he's back on the med. He laughs a lot and has a good amount of energy. A huge difference from the near hysteria he was having in Oct when he was off the med. And even though he's only gained a few weeks between seizures, since we've increased the med his seizures have decreased in severity and duration. In fact the last several seizures were so short we didn't have time enough to give him his Diastat. We talked to our local neurologist about this change in seizure activity and he was quite pleased. He said that stopping seizures is very similar to turn a faucet off. (I thought it was more like electricity, it's either on or off. You're either having seizures or your not). Dr Wooten said that the fact that his seizures have decreased in intensity & duration means that we're going in the right direction. He's always been supportive but pessimistic. This visit he was hopeful that we might finally get some seizure control.

Reading, Writing & 'Rithmetic

Ben finally had his psych eval from his school psychologist. (It was on their "to do" list since last May.) We also got updates from his teachers & his therapists (speech, PT & OT). The overall evaluation is that Ben has "significant, global delay". They have him from 18 months to 26 months developmentally depending on the area they are testing & the type of testing they use. We knew Ben was definitely delayed but it was a kick in the pants to see it in writing. We also know that some of this outcome has to do with the standardized testing. For instance, they hand him scissors and ask him to cut paper. Ben can't do that but if you get him started he does fine. Unfortunately, they're not allowed to do that. Another task is for Ben to build a "train" with building blocks. Well, he won't even play with blocks. So, he fails the test. But overall there's no doubt that Ben needs significant, intensive intervention if he's going to catch up or at least stop falling so far behind. Unfortunately, his school district doesn't believe in holding back kindergarten aged children. I think he could use another year in pre-school but I would like him to be in a "mainstream" preschool with "on target" kids. He needs to be challenged academically and have daily contact with normally developing kids in a classroom setting. We're all going to reevaluate in May and try to figure out what's best for next year. I just don't know if we have a lot of options. In the meantime, they've identified Ben as "other medically impaired" which will give him more classroom support. He also qualifies for the extended school year (a whopping 2 extra weeks at the end of the normal school year). But we're going to enroll him in every class we can find, music, gym etc. Just to try to increase his exposure to group activities and various social settings.
One thing I will say is that just when I'm thoroughly depressed over Ben's delay he throws a curve ball at me. Here's a kid that can't consistently tell you his name or age. But the other night, I came home from work, took a shower and sat down to color with Ben. I was in my pajamas and had a purple turbie twist on my head (think towel for those of you who don't know). Ben kept looking at me while we were coloring and I finally said, "what's up Ben?" and he said "nice hat mom". Go figure!!!

Bon Appetit!

No matter what we're dealing with,Ted and I are so lucky, We have so many friends and family members that help us out anyway they can. Just a couple weeks ago, I had a bunch of friends over to cook up some keto meals for Ben. It was our second session since he's started the diet and it's a major help for me. At one point we had 16 people in the kitchen at one time. And it was fairly well organized and relatively quiet, because everyone had to concentrate on the weighing out the food. We had 7 different "stations", each station made a 2 different meals. Plus we had a labeling station where the meals were labeled and we kept a running total. We ended up making 8 different meals and 3 different snacks. By the end of the day we made hundreds of meals and just as many snacks. It is such a major help for me. Keto cooking isn't hard, it's just really tedious and Ben needs 3 meals and 3 snacks everyday. There's just no way I could do cook that much on my own. Because of everyone help, I can now grab something out of the freezer, add milk for Ben to drink and he's ready to go.
It makes life a whole lot easier.

I hope everyone is doing well and staying healthy.
Keep the faith, spring is around the corner!

Love to everyone,
Meg