Two weeks ago, as many of you know, we started a very scary couple of days here with regards to my daughter’s epilepsy. Ruby, who is five years old, had three very long seizures within a four and a half day period, sending us to the emergency room and freaking us completely out. Since then, we have not had any episodes, and we have been feeling optimistic, but we had little to no official confirmation of anything, until Tuesday.
On Tuesday, we finally got the chance to sit down with her neurologist and talk things over. The first thing we talked about was why my son Edward had taken an orange marker and decorated the exam room. The answer: because he is two. He really wanted to be included in the appointment, so while the doctor checked Ruby out, Edward stole some of the doctor’s equipment and gave a checkup to Daddy Bear.
One thing we learned was the result of Ruby’s blood tests, which showed her medicine levels to be at 47. I have no idea what that means, but they said they want the levels to be at 50 or higher. Since this blood was taken before the increased dosage, we are pretty confident that the levels will now be above 50. We’ll get another test done in a month or two, just to be sure.
So was that it? Medicine levels had just dipped too low, allowing these seizures to slip through? I don’t know. No one really knows for sure. All we know is that they happened, we increased the meds, and now they are not happening. And that’s what we will live with for a while. We will rely on prayers and hope, and we will assume that what happened two weeks ago is not going to happen again. We left the appointment feeling okay, and Ruby and Bear both survived, which was a big win.
Out next appointment is scheduled for nine months from now, so the doctors are clearly no longer that concerned. They think that this was a fluke thing and that, as long as we keep an eye on those blood levels, everything should be controlled by the medicine and everything can go back to normal. But going back to normal is hard after the past few weeks.. Almost as hard as finding Bear’s heartbeat. We’ll keep working on it.
