After very long morning, we’ve finally made it home. Gavin had his appointment with Dr. Moodley and while we have good news to share, I’m uncomfortable with it.
Gavin had a neuro exam today and Dr. Moodley says that if we didn’t know he had Autonomic Dysfunction, He’d say that Gavin was perfectly normal. He said that we know he’s not but that’s just how well he’s doing at the moment.
Why does this make me uncomfortable? Shouldn’t this be good news?
Yes this is good news and yes it also makes me uncomfortable. The reason it makes me uncomfortable is because all of a sudden, everything is fine now. Why is it fine now, what’s changed? Is this the calm before the storm? Is this a sign that he’s getting better or is he actually getting worse?
Everything changed after last week’s Autonomic Crisis that saw Gavin admitted to Akron Children’s Hospital. The crisis was unlike any of the previous ones and it seemed to cause a shift towards what we are currently seeing.
This is new ground for us, so I don’t know what to expect and that makes me nervous.
Aside from that, we were told again to get an appointment with John’s Hopkins Autonomic Clinic for a second opinion. Dr. Moodley is hoping that they can provide more insight into what’s going on with Gavin. Their Autonomic Clinic has been around for a very, very long time.
That’s basically where we stand.
Gavin’s currently in a period of stability. We don’t know how long it will last but we’ll take it.
The only problem we ran into was Lizze having a full blown panic attack on the way home from Cleveland today. She’s not doing very well right now and I’m not sure what triggered this but it was a big one.
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