Today really sucked. Gavin crashed during his #IVIG infusion and I was really scared.

I have to admit that I’m so stressed out that my chest hurts when I breath. It’s all anxiety but it still makes it harder to present to Gavin as though everything is okay and I’m not worried.

I’ll be honest, I’m really freaked out. Gavin is scaring me to the point I feel sick to my stomach. He’s lost 25+ lbs since June and his diet hasn’t been reduced. In fact, it’s been increased and he’s still losing weight. He weights 110 lbs now and that really scares me.

I wanted to update everyone as to Gavin’s condition, following today’s Autonomic Crisis.

We survived the night.  Gavin is actually still sleeping and slept straight through the night.  There were several doctors that came in throughout the night to ask questions and examine…

First of all, I want to thank all of you for your thoughts and prayers today.  This has been a really, really long day. Gavin has had the last of…

Gavin is in his room now and officially admitted.  There's too many weird things going on to be comfortable sending him home, without watching him overnight at the very least.…

As we were preparing to be discharged, another doctor came into the room and wanted to talk with us about what was going on.  Because they never see anyone like…