Sunday, July 20, 2008
Special Needs Strain
I'm worn out, tonight. I'm feeling the strain of Sophie. She slept all morning and then woke and had a huge cluster of seizures. Her palms and feet were wet with sweat-- I'm not sure what it means other than her hormones are completely out of balance. I think I'm on to something with the hormone cycles and the seizures but I'm also back at the space where no one is in the driver seat. Or, rather, I'm in the driver seat. What to do? Who can help? Who has the ideas? This is always the way it is with Sophie's seizures -- the visit last week to the new neurologist, while pleasant, was completely useless. Here's the thing: Sophie's seizures are following my own hormonal cycle in an almost perfect synchronized way. Twice a month she has a "bad" couple of days which are then followed by a couple of peaceful weeks. Anyway, today she had this huge cluster of seizures and went back to sleep for basically the rest of the afternoon. I was sort of relieved to not have to do anything with her -- she slept peacefully in her room until late afternoon. Then she woke up, and the whole thing started up again. Michael and I went back and forth on whether or not to give Diastat (rectal valium). Michael hates it because it makes her groggy for about a week. I sort of hate it but also think that Sophie needs a break. From the seizures. But then I wonder whether it's just me that needs the break -- from the seizures. Maybe I should take the rectal Valium? We didn't give her the valium and she eventually quit seizing, had dinner and is now asleep again in her room. Sigh.