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…

I wanted to let you all know that we have e made it home, safe and sound.  Before getting into how Gavin s doing and our plans going forward, I…

Gavin is getting discharged this morning.  While his condition hasn't really changed, he's not getting worse.  We may be dealing with a new baseline now.  In other words, this may…

Because of Gavin's autonomic dysfunction, his doctors have him on a very, very strict fluid intact schedule.  Gavin's only allowed 2.5 liters of water (only) per day. We carefully monitor…

I'm a bit concerned about Gavin this morning because he says he doesn't feel right.  Actually he says,  "Daddy, I feel funny".  It's never a good sign when Gavin says…

Gavin threw his tantrum, I want to say.....around noon today.  After he got himself under control, he wanted to go lay down. It's now 5 hours later and he's still…

We have made it to our appointment, without incident.  :-) Right after getting on the freeway, Gavin's heart rate kept bouncing between the low 60's and the low 120's. This…

At this moment, I'm hiding in my bedroom pretending for a few minutes that I have the luxury of quiting. Quiting everything and just running away.. Of course, I don't…