Oliver is awake most of the day until he takes a 20 minute catnap and wakes up having seizures and we end up needing to use Valium and sometimes with morphine to stop the seizure cycle, THEN he is tired. Between the seizures themselves and the medicines, he is out for at least 2 hours afterwards.
We need to get these under control!
To watch his tiny 27 pound body twist and contort, to watch tears stream down his face and his lips turn blue, to hear his screaming and whimpering afterwards. It's pure torture, what I wouldn't do to take his pain away.
He had a few seizures at PT today, and I tried to catch them on video but I only ended up getting the end and aftermath of one. I won't post a video of his seizure, it's too upsetting, but here is what a still photo looks like:
(clicking play won't work, it's a screen shot)
His hands and feet twist inwards, you can see his lips starting to turn purple. He doesn't breathe during his seizures.
Here is a video of the aftermath of the seizure: