Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Monday, September 19, 2011

Cinci Update

The details for our trip to Cincinnati have been sllloooowwwlllly coming together. I've been in contact with one of the coordinators 2-3 times a week and the nurse probably once a week. For as on-the-ball as things were that first day of me getting things set up there for Kara (AUGUST 18th!) the process has been ridiculously slow. The latest hang up has been getting the biopsy slides from the U of MN.

The coordinator has requested them two times with no luck. With a phone call, it was found that I need to sign a form to have them released. Email, print; sign, scan; email again. At least this could be taken care of electronically! Last Friday, the update I received via email was that she had still heard nothing. Today I received another email that they finally got it and are fed ex-ing the slides so hopefully they are there tomorrow, or at the latest, Wednesday. I'm sure it's going to be another week before we even know WHEN the heck we'll be heading out there. Pathology has to review the slides and then the nurse presents on Thursdays, from what I understand. Fingers crossed this will be ready by Thursday but I wouldn't be surprised it it was yet another week. In the meantime, we'll just keep hanging in there, doing what we do best!

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