Even though he is going up and down he is still making some progress, mostly verbally. He's trying to sing a lot right now. On the four days he was seizure-free, he was gaining progress rapidly. He didn't really want to sit on the couch and be still. He's still only able to scoot around on his bottom while sitting but he wanted to be doing that. I did get him to crawl back up our 3 steps from the family room into the dining room. He hasn't done that in months. Since he was moving around so much, I was retraining on "no touch" items. In a couple of days, he relearned the remote controls, DVD player and TV, electrical outlets and folded clothes sitting on the couch. He learned them as well this time as he did the first time. Joyanna is my whirlwind and I had forgotten how easily Philip learned a lesson and stuck to it. He was so cute to watch with the folded clothes. After I told him "no" the first time, he came back over and looked for a few seconds, then said, "no, no." He turned away but then turned back in a few minutes and looked again. This time, he didn't say anything but just shook his index finger at the clothes as I guess I was doing when I told him no.
It has been so wonderful to see him seizure free that it's really hard to see him start having seizures again. He doesn't like it either because I think I could almost pinpoint on Saturday night when he knew he was going to start having them again. He got really frustrated and there was no real apparent reason. Then later, I noticed some of the seizures.
Pray we can work out a balance that's helpful to him and workable for his body. Pray for wisdom for his doctor and dietician. Besides us, they are making most of the decisions that directly affect Philip right now.