Its been a rough couple of days. Eric Ryans seizure activity hs increased making it hard for him to sleep. Everything was going great with the taking him off Phenobarbital & adding Kepra. But Saturday was his last dose of Pheno & since then it hasnt been good. The seizures have been lasting 45 secs to 1 minute & after he starts crying. I just hold him & talk to him & just let him know Im here with him. It breaks my heart that I cannot do anything to help him during them. Also for the past 2 days he hasnt been able to sleep very good. He wakes up after about 20 mins of sleeping & struggles to go back to sleep. So, as you can probably tell, I'm pretty tired. Today I called his neurologist to le thim know what was going on & I was told to increase his kepra morning & night dose by 0.5 cc's. Lord willing we will have a better day tomorrow & a more restful night.

On a good note, I think Eric Ryan hearing has improved. Well, I should go back a little. Before he was released from NICU when he was 4 mths old he past his hearing test. A few months later was went to see an ear, nose & thoat specialist (due to problems that can occur due to having a cleft). There they did another hearing test & he past again. But, he doesnt respond to sound. You can call his name, yell near him, slam doors, anything & he wont stur. I always thought that it was neurological. That he could hear but his brain wasnt registering, if you can understand that. Well, for the past few days now I've noticed a change. When my sisters kids slam doors, he's been reacting. Then the other day I was taking him a bath using a large plastic cup to rince him off & I squeezed the cup. When I released it it made a crackling sound & Eric Ryan sort of jumped. I had never seen him react like that so I did it again this time on purpose, the same reaction. Then last night I sneezed next to him & I woke him up! I have been told by other parents who are in the yahoo support group that once their child was off Pheno they began seeing postivie changes. So, hopefully Ryans reaction to sound will increase! But I do than God for what I have seen so far!