The Balancing Act...

This is what I woke up to this morning. This is game we call " To Worry, Not to Worry". We were supposed to have an MRI yesterday but because of the snow we had to cancel it. It will be three weeks before we can get another scan done. A lot can happen in three weeks. The hardest part of this is how much things change sometimes right in front of our eyes. Jon has been struggling since the end of November. About a week ago things started to concern me..mostly his eyes. So finally I emailed the dr and they agreed to do a scan. Of course as soon as I call then he does a turn around and seems ok (but the eyes are still funky). I even took him to the pediatrician who remarked at how he doesn't seem like himself...but no one seems overly concerned. So maybe I am just a crazy mom. Maybe I see too much, maybe I am too particular...so I convince myself nothing is really going on (and really..there probably isn't). I convince myself that its ok that the MRI is three weeks away. I tell myself and my friends that if something is wrong it will still be wrong in 3 weeks and I move on...until I wake up to this this morning. I know that if I showed up at the hospital with Jon looking like this that would not only scan him today they would probably admit him. Problem is that if I actually call and take him in he will be fine by the time I get there and they will pass it off as this is just how it is with hypothalmic injury...
I get the whole hypothalmus issue. Really I do. I know there are up days and down days. I have lived through enough raging to understand how his body doesn't work the way ours does. I have watched as my child has literally turned purple right in front of my eyes and then just as quickly returned to a normal of shade. I get it. But I wish someone could explain to me what to do with the way my heart feels and how to not hold my breath when I wake to this every morning and I know something is wrong and the balancing act begins...