August 16, 2008 - Saturday
Another Update
Ok...they had us skip a day on the second medication that they gave him so today was a bit better. He woke up around 9 am in an awful mood. He actually kicked me in the face, hit me several times, bit me on the wrist. Hehas now made a regular thing out of headbutting me in the chest. Apparently this is all just the medication. I think a small part of it is that his whole little world has been turned upside down and he doesn't understand what's going on. Since he can't communicate that, he gets angry. At this point, disciplining him in any form does no good because he just doens't understand. You can look at his glassed over little eyes and tell it isn't him lashing out. That's what makes it so bad.Anyway, Jesse and I left for awhile today...went out and got some fresh air. My mom is flying home tomorrow...so it will be just me and Justin during the day starting Monday. I'm scared. Anyway, he took a 3 and 1/2, basically four hour nap then when we got home, he got in the shower with his daddy (we are still fighting croup on top of all this) to clear his little throat and he starting beating his head on the shower floor. I called his behavioral therapist (he was seeing her for the head banging anyway) and she said that a small percentage of children who take the Keppro have very violent dispositions with it. She also said that she noticed him having mini seizures before...but didn't feel it was her place to say anything. Duh? Yes, I want to know these things. Anyway, she said that when he gets out of control, there is going to be something that triggers him. The trick will be finding out what that something is. Whether it is a sight, a sound, or a noise. So we are in serach of that something. I've found out that most of his light up toys send him into hysterics.....absolute fits. She also said that when he loses it like he does to wrap him up in his blanket and restrain him gently.Anyway, he was up for a couple of horus after his nap. We took him to the beach and let him sit on the water's edge...and watch his daddy fly kites. He actually held his kite for a while and flew it and then he even got to play in the water. I think we've found his happy place! ;) We are going to be spending a LOT more time on the beach through all this, I guess. Our evening before he went to bed fairly well. He is a teeniny bit more surefooted...it is a small improvement at the very least.Thank you so much to all of you for the kind words and the prayers. We do know that God is in control. In all this, I know he has't abandoned us and we will not abandon our faith that he will pull us through this. It won't kill us, it will make us stronger. It could be better, but it could be SO much worse. Yesterday was bad, today was better and by the grace of God...tomorrow, we'll get to hear him laugh.
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