So...

Hopefully this post makes some sense, I'm exhausted and out of it.

Last week we had the only appt that was happy in I don't know how long.  Aidan's vomiting is under control again and his GI specialist was clearly happy that he looked healthy and that I wasn't reporting another regression in vomiting.  We left relieved and lifted.

Then the next day the EKG showed some really bad news about his heart.  It all happened so fast, we didn't even make it home from the hospital before they were calling to schedule the cardiologist.

Then the neuro today.  I will keep it short for now... I'm tired, having too many symptoms of my own and need rest.

They are willing to increase meds again as a temp fix, (we chose to increase Jace's, but not Aidan's or Damon's yet) but it's not a long term treatment and in fact there just isn't any treatment for what they are convinced is going on.... they keep hoping some help will show on the horizon, but there just isn't... the whole heart thing was no surprise to them and only added proof to their direction.  This time he showed emotion over what Aidan is going through as the oldest and most advanced in whatever the crap this is and the fact he can't really help.  Aidan is just miserable physically.  He's doing the best cognitively he has since this hit, but that's still not saying much if you're just talking epilepsy.  Jace and Damon continue to present the exact same symptoms, following in the exact path as their older brother.  I left numb.

Met with one of my brothers before we left.  My heart aches for him and his little family too... 

I am grateful for a warm (as warm as it can safely be, lol) home and a car that is still working.  And grateful for the beds we have to fall into tonight as all this sinks in.

I'm so sorry, Little Man, for not being able to get you help for your "differently beating heart" and your ever increasing seizures and overheating. <3 p="p">