Over the past month, we've seen things pretty much remain the same. His big seizures (90 seconds) come every 2-7 days. His pattern of having them at consistent intervals appears to be done, and now we just never know when to expect one. He still has at least a couple of small seizures every day too.
We increased his Felbatol to what we think is his max a couple of weeks ago. He's now taking 10ml/day. We got his level checked on Wednesday to see if there is any chance we can go higher. We won't find out the results until Monday.
John remains happy and full of life. He's more hyper than ever, and as he grows it gets harder to take him places. His new thing is tapping everything he walks by. I think he is interested in the different sounds. He hits absolutely everything, including cars and even other people.
He continues to be a little gymnast, and turns himself upside down whenever possible. Yesterday, our blinds were all the way up. He was able to grab them by standing on the top of the couch. Then he preceded to walk up the window while holding on the the blinds. By the time I got to him, he was hanging upside down from the top of the window.
We got his speech evaluated at OHSU. I think this was his 4th speech evaluation. In any case, he of course qualified for their speech program and they also thought he would qualify for the autism program. He can't get the autism evaluation done for a couple of months, though. We also requested an evalution be done by the ECSE for autism, in hopes that he could get more therapy through them. They reluctantly agreed to do the evaluation, but we haven't gotten anything scheduled yet.
He's been going to the new OT and speech therapist once a week. It's been good, but it's a long drive for a 1 hour session, so we are also going to try a place closer to our house. We suddenly have a lot of options. Our strategy is to try them all and stick with the best. Still, these therapies are all just 1 hour a week. We're still hoping for more than that.
Our neurologist is both very busy and very popular, so our next appt isn't until August! We are probably going to have to find another neurologist, but I don't think we have a lot of choices.