Results

In a nutshell, we think Roxanne is fine. Her doctor explained that last week's EEG was consistent with last year's, showing activity in the surgical area, which is not unexpected.

We hope that an increase in her current medication will eliminate the neurological symptoms.

This is never really over.

Mission accomplished.

Roxanne did amazingly well with her sleep deprivation routine and EEG today. What a girl.

I was predicting massive meltdowns last night as we kept her up until midnight, and although she was fussy, she was generally fine. Dan and I owe a huge thanks to our friends S & D, who unknowingly volunteered to babysit for her until 10pm last night, thinking she'd be in bed by 7:30pm. I offered them the challenge of overstimulating our toddler, and they were just the folks for the task. Thank you!!

Waking Roxanne up at 5am this morning was a real challenge. I had to pick her up, talk loudly, turn on lights, give her milk, and generally annoy her for a couple of hours until it was time to leave. She kept saying "lay down?" and I'd say, "let's walk around!"

I'm so thankful that Dan could come with us to the EEG this morning. I kept Roxanne awake in the car, and Dan took on the job of keeping Roxanne calm while the technician attached about 25 electrodes to her scalp with conducting gel. Roxanne won't even wear a sun hat, so I was dreading the possibility of her screaming, thrashing, and otherwise making the test impossible. But Roxanne listened to Dan's calm voice explaining everything to her, and while she was a little whiney, she hardly moved.

Then it was time for her to go to sleep. Yeah, right! But Dan put his head near her on the bed, held her hand, and talked soothingly to her, and she eventually dropped off. Wow. A testament to them both.


By the time we got home, Roxanne was really tired. I'd say she was more upset during the bath to wash the gel out of her hair than she had been for the whole test. After a long nap today, she's doing fine, and I haven't seen anymore of the strange symptoms that led us to the test.

Thanks to everybody who called or emailed your support. Roxanne has quite a fan club. We should get the results from the test in about a week, and I'll keep you posted.

She's OK, but...

The main thing I need to remember is that Roxanne is doing just as well as she was last week.

But last Friday, she started showing some strange neurological symptoms. She was walking along just fine, then she suddenly lost her balance and wavered unsteadily. Her facial expression was surprise and dismay, then she cried. After she calmed down, she was fine again.

Sure, this sounds like what toddlers do: they toddle, lose their balance and often fall down. I've seen Roxanne do that hundreds of times, but this was different, I have no doubt. I also saw something weird with her eyes over the weekend, and again saw the problems walking this morning. I don't know what it is, but it's not normal. It's not an all-out seizure, but something is going on.

On Thursday, Roxanne gets another EEG, her first in at least a year. They want her to fall asleep during the test, so she has to be sleep deprived. That means I'll keep her up till midnight on Wednesday night, and get her up at 5am the next morning. That's going to be such fun, I can just tell.

Sigh. Just when we started to relax.

The irony of all this is that on Friday morning, I was interviewed with Roxanne about her success story. Channel 7 is working with Children's Hospital to do a segment on their epilepsy team (that does outstanding work!). Roxy is an example of a child who had brain surgery to eliminate her seizures, who is doing very, very well. I'll let you know when it's going to air. (Hm. I wonder if I should call and let them know the story has changed?)

I just have to remember that Roxanne is still doing very, very well. We will work this out.

Sigh.

Calm before the storm

At about 5pm last night. Ah, sunshine.



Roxanne can finally say her name clearly (it sounded like "Wassahn" for a long time), and she often calls herself Roxy. In honor of this, I played "Roxy" from Chicago for her. She seems to be warming to it, as well as "Roxanne" by The Police. We'll have to have a little chat as soon as she's old enough to understand the words, but for now, it's just a song with her name in it, whee!

Here's another song that she wants to watch again and again: I Love the World.

Boom-dee-a-da, baby.