so..... now what or how the BK virus has become our nemisis

Bladder-Kidney or BK virus is present in 80% our our bodies.  It sits dormant and waits until things are hinky.  She has lots of the virus and now is having huge pain problems.  Pain that is so very horrendous that she throws up her pills and breakfast and dinner and.......

It is transmitted via blood products and from other people.  It has reactivated and there are ways to make it go away.  Because it is a virus there really is nothing to do but let it run its course and let her body fight it. 

 Opps, my daughter has no immune system.  We are doing lots and lots of things to suppress her system.  I suggested they stop the MMF and Tackolimius  (immune suppressants) and there was a chuckle and then a NO  NO  NO HELL NO.

No plan to leave.  No way to really get out of here until we find some sort of solution to excruciating pain that comes on in a nano second.

What to do?  Work on food issues.  String Cranes. Help parents, try to figure out how to manage at home when she is discharged.  Keep at St. Anthony about my kindle, try to remember who to thank for all the support and food and Starbucks cards we have received. 

I am starting to let myself think about finally going home.  I am looking forward to finishing Mary-Elizabeth's room moving her back in.  I am looking forward to some limited gardening.  I am looking forward to dog walks with both dogs.  I am looking forward to cooking in my own kitchen.  I looking forward to being on a firm path to what ever lay ahead.

I just wish we could convince Ellie Mae to speed up a bit.  She is moving at a turtle pace.