The Slayer checked in to Childrens Hospital Orange County (CHOC) this morning for at least a week of tests. This was a scheduled visit. She’s working with the neurology team there to do some extensive observation of her seizures. They’ve been coming on much more frequently. As you know, we’ve tried many drug therapies. With some, she’s experienced such severe reactions that they’ve been ruled out entirely, narrowing our options. With this stay, we’re hoping to gather new data that can help the neurology team develop therapeutic options.
Jordan has been very cooperative and positive about the stay. She hates the process. It’s not painful, but it does require her to wear electrodes on her head 24/7. They get itchy and make her uncomfortable.
She’ll be at CHOC for at least a week. Unlike past visits, they won’t send her home until they get the data. The last time we did this series of tests, Jordan had no seizures at all during her week of observation. This time around, if the seizures don’t occur, the doctors will begin weaning her off of her seizure medications–in other words, they’ll put her in a state that is likely to induce a seizure in a controlled environment. For this reason, she could be inpatient for quite some time.
I thought I would send you some photos from her admission this morning. You can see what it’s like when she becomes a human antenna.
As usual, The Slayer was a pro’s pro with the process. She was talkative and friendly all throughout the check-in process.
Waiting is always the hardest part for her. She gets bored easily like any other teenager. Time can make long, observational tests like this one the biggest challenge.
She’s got a room to herself with a fairly decent view. Her only roommate is her mom, who has to be with her at all times to help in the monitoring process.
When it was time to begin, Jordan relaxed in a pair of her favorite pajamas and watched television calmly. At one point, she had a mild seizure, but it was before she was wired so we can’t count it towards our data quota.
By the time she’s wired, she looks like something between a mummy and a sock puppet. I kept teasing her about it. Somehow she tolerates from me words that would be gasoline from her brother or just about anyone else.
You can see the video of her being monitored in the background. When I left, she was enjoying TV (even though it looks like she’s frowning). The equipment at CHOC is top rate. Unlike previous stays, she can get out of bed and stay active because the devices are very portable. That little blue pack to her right holds the controller and it straps on when she gets up.