It's been a while since I've posted, and quite a bit has happened in the last month.
We have continued to lower the Felbatol level. He is now at 5ml/day, down from a high of 12ml/day last year. John does continue to have a lot of the myoclonic jerks. In fact, they are getting more frequent and a little stronger. But, since these seizures don't really seem to phase him much, we're opting for the lower drug level anyway in the hopes that it will help him to learn.
John does seem to slowly make progress. He has taken an interest in picture books finally and will usually repeat the words. He still has a hard time pointing at a picture when asked, but can sometimes do it with real familiar objects. He's getting better and better at riding his bike, but still needs someone to walk next to him at all times. And he refuses to wear a helmet, which we have to rectify soon.
It's been over 1 year now since we've seen a grand mal seizure! That's a pretty good milestone. I just wish we could get rid of these myoclonics as well.
And, it's now been 4 years since this whole thing started.
We got John's placement for 1st grade awhile ago. We visited the school and we weren't very happy with it. John was placed in the lowest level of special needs. It's really sad to go visit those classrooms. We tried to fight it, and had another IEP meeting, and visited another school. Unfortunately, the other class was just as bad or worse. So, after all that we ended up back with the original placement. They explained all of the different levels of special needs and it just didn't seem like John fit in any of them. So, the default is to put him in the lowest level. We'll continue trying to push John. It's our hope that he can learn to communicate better and we can eventually get him in to a better class. It's hard to believe my son belongs in that class, especially since he was so bright in his first couple of years. It's amazing how things can change so quickly.
John's birthday is coming up, and we're going to have a party at a rock climbing gym. I'm sure he'll love that!
School gets out for the summer this week. John will be in summer school for 6 weeks, and we have 2 other therapists that he will be seeing. Plus, Maya is signed up for swimming, cooking class, pottery, Japanese school, and piano. So, the summer will be busy!
