Forward Backward dance

There is this song that they sing on Sesame Street called the Forward Backward Dance, all day today I felt like that is what we did. Step forward, step backward, step forward, step backward... and on and on and on.  Finn no longer has a fever and last night we started his tube feeds again but we are stuck at a really really low rate and having to keep him on IV fluids.  Even a small bump up of 5cc and hour is causing him to gag and cough and vomit.  I don't get it.  5cc and hour, that is such a small number that it shouldn't make that much of a difference and yet, it makes a difference, a big one.
I am thinking in some way Finn has been working to this point for a while but something that is so frustrating with some kids with Mito is that you feel like you are beating your head against a brick wall trying to get a doctor to listen to you.  There are those days that I just want to stand on the chair that I am standing on wave my arms and scream "ARE YOU LISTENING TO ME"  today was one of those days.
Oddly enough I feel this way with God sometimes.  Especially in times like these.  It is so hard when you see all of this going on and there are no clear answers to know that I am not living for here, that this earth is not my home nor is it Finn's home.  That is such a hard hard pill to swallow.  That even if Finn were perfectly healthy he would still have struggles and life would still be hard just in different ways.  And to know that God does hear me and that he is weeping that Finn is struggling.  I could go on and on.  But this place is such a lonely place, to know that God is weeping for my son and yet my son is still struggling.

Tomorrow is another day of forward backward motion, we are consulting with GI. and going to try again with the formula restart...