We really like our pediatric neurologist at Primary Children's Hospital. He adopted two children from Haiti last year. He is really kind to and patient with Ammon. He kept commenting that Ammon isn't the same boy we brought him in January after his adoption. He is right. Ammon cooperated with the to vital checks and didn't even try to dart out of the room and run down the hallway one time! That is because mom made sure to bring a backpack full of his current favorite toys...tape measure, and golf tees for him to line up on the floor in the opposite direction a golfer would do. Ammon has the point sticking to the air. HE LOVES THESE!
Ammon is almost back to 40 lbs after going down to 32 lbs from 40 lbs in May/June when his blood numbers were so out of whack. We were pleased about that. He is 2 inches taller.
Ammon is on Trileptal and they moved him up to 300mg twice a day. If this doesn't bring improvements after a week, he will begin a new medication. But, poor kid now has upwards of 7 seizures a week when before we were seeing one every month. At least these multiple seizures don't last as long as the once a monthers did. He had one in the middle of the nursery class at church last week. I am one of the teachers there so I saw him go down. The other teachers were very anxious. The children were frightened too. I don't want Ammon to be scary to the other children and I think we find scary what we don't understand so I explained to them what was happening and that Ammon's brain was getting stuck and that he would be okay but a stuck brain can make your arms and legs do strange things. Everyone watched closely and when it was over one of the 3 years olds put her hand to her chest, breathed a sigh of relief and said, "Phew, he's alive!" Now the next time this should happen others will know how to handle it. And the children will see he isn't a monster; isn't a weirdo. Its just what happens to him sometime and then he is Ammon again, a tired Ammon, but still Ammon.
He had one on Early Intervention bus and the bus driver and aid were both crying by the time they got to my house. It is unnerving and no matter how many times I see it myself it makes me anxious but if dealing with seizures means we get to be Ammon's parents we are happy to deal with them. They really are manageable. And nature blessed Ammon with an immediately endearing smile so people want to love him and help him.
When Ammon does have a siezure his eyes always open. They stare at you with the imploring look that begs, "Help me. Help me." Of course he can't see us but we can see those eyes and they make us feel overwhelmingly protective of him. I think that is nature's way too. Sometimes just his right side will convulse and sometimes just his left side and sometimes his whole body. But those eyes are always fixed, always calling for help.
No sooner has we started to get on the freeway to drive home that I hear a squeal from Lan in the back seat next to Ammon, "Mom!!! Ammon's having a seizure!" I quickly pulled off the road and put my arms around him while he sat strapped in his car seat, bubbles frothing from his mouth. Then it was over and he slept the 3 hours to home.
Thank all of you who continue to pray for him and think of him. We appreciate that more than you will ever know. We still need help to get him on the right meds so these are controlled a little bit more.
One week and Ammon has been seizure free! (Knock on wood everyone.) Up to a week ago we were seeing seizures almost daily and sometimes multiple times a day. Since we increased the medicine dosage and waited a week to see results we are seeing results. We are really hopeful!
