Luke and I took Addy to her neurology appointment on Friday. It took a month to get the appointment, which at the time, felt like an eternity. But, really, I guess you can’t scoff too much.
Funny thing is that, with everything going on, I haven’t really had time to get nervous about it. But as we were sitting there checking in with the nursing staff, it hit me that this was a big deal. They asked which pharmacy they should send prescriptions to, and it occurred to me that this meeting could have a completely different outcome than I had assumed it would. I’ve gotten pretty used to foreseeing what we’re facing with each appointment we go to with Piper; this bit with Addy has me thrown into a world where I know nothing, and I think that’s part of what makes me so nervous. At least with Piper, I had done enough research before she was born to have a fairly good foothold on most of our possibilities; I haven’t had that “luxury” (yes, I use that term loosely) with Addy.
The neurologist we saw was incredibly nice. I seriously liked him, and that put me at ease. He played with Addy the whole time, sometimes for a purpose, and other times just because he thought it was funny. He looked her up one side and down the other. He looked at her eyes closely. He looked at her skin under a black light looking for any hard-to-see birth marks. He did a full neurological exam, watched her move, and watched her play.
And while it wasn’t exactly what I thought he’d say, it wasn’t terrible, either. He’s as certain as he can be with the limited information we have that it was a series of seizures. The diagnosis that’s been in her files so far has been something in the Syncope scope, but he changed it to Convulsions-NOS. It’s been mentioned several times that maybe it was just a breath holding spell, which I have never really bought. He didn’t either, at all. So, not that I’m glad, but I am happy that we’re on the same page. And given that, he said that she has a one in three chance of having another episode. Not great, but it’s certainly not a given. If she were to have another, it’s most likely to happen within six months. It’s rare to happen after 12 months, and by 24 months, you’re out of the woods. He said to keep a very close eye on her until that six month mark. We’re not supposed to allow her to have a fever (give Tylenol prophylactically after immunizations and quickly if she gets a fever from being sick), not let her sit in the bath by herself (uh huh- go fig, huh??) and try to limit activities where, if she were to have a seizure, she’d get hurt. We’re to call 911 as soon as she starts seizing, just in case she has a hard time recovering, and he gave us a list of instructions to use if she seizes again. If she behaves herself, we go back in 4-6 months. If she has another seizure, then we’ll go back sooner and start medications.
Phew. It was a lot of information, but I feel better with at least a little bit of closure to the whole thing. Looks like we’ve come to a conclusion about what it was (which has been more of a relief than I thought it would), and we have a plan as to where to go from here. And I feel like we can make it another five months; by Christmas time, I can start to relax a bit more.
Can you please tell me how 16 1/2 pounds can cause so much trouble???
I think my mantra will always be “at least she’s cute.”