We went back to see Dr Hammesfahr today, the neurologist who is treating Sam with the nitro cream.  Sam has been responding well to it, but for about the past week I haven't really noticed his responding to it, to any degree that I could notice, anyway.  So I fully expected to increase the dosage to 4 times a day from 2, but instead we are DEcreasing it to one treatment every 3 days!  He explained it this way:  we are not healing his brain, but healing his blood vessels that go to his brain.  The blood vessels open up with this cream, and the object is for them to remain open, of course.  If we move too quickly, they will then close down again (sounds crazy, but it made sense the way he explained it) so the fact that I stopped seeing change might mean that is happening.  Another hazard with moving too quickly, so the possibility of stroke is there as well.  I guess I'm at peace with going slowly; it's frustrating, but we need to do no harm. 

 

He said that the most important thing we have to do right now is play with Sam.  We're in for a long haul (according to him, who is a good guy but not God) and he said the best indicators of Sam's success are my well-being and eternal faith in Sam.  Somehow I'm supposed to have a life outside of this, apparently.  But I agree with him about what's important.  Funny to hear a doctor say that, you know? 

 

So how to play with Sam.  Not easy, when he yells at every move we make.  We'll figure it out though.  A smile would make all the difference.  I really need him to smile at me.  I don't know how to explain this to anyone who's not been through it, but there's really not anything normal about any of this.  I know normal is coming, I don't doubt that, but some days it's just so hard. All those priceless little payoffs you get from your kids are missing.  I don't get a hug or a smile.  Never a giggle.  I don't even get acknowledgement that he knows Mommy's here.  I have only once been able to pull him into bed with me and cuddle him back to sleep; the rest of the time he stiffens up or needs suctioning or has to be elevated so he doesn't reflux or blah blah blah blah blah.  I can't just pick him up and comfort him; always need to be sure the suction machine is nearby, and suctioning just makes him madder, which makes him need more suctioning, which gets in the way of just soothing him.  In the morning I know he's waking up by looking at his heartrate on the monitor.  Every now and again I think I hear him calling me, but of course he isn't.  It's just always something.  And I can understand that, but I don't understand why it's always everything. 

 

And now I should apologize for getting lost in my pity party and dumping all of that. I hope I didn't make anybody too sad.  But I feel a little better, so thanks for listening.