Hello Lmastro, So sorry you have to be going through this.
You might want to try these links:
Dr. David Margolis @ Children's Hospital Wisconsin
http://www.chw.org/display/PPF/DocID...v/1/router.asp
You can also visit or call AAMDS at
http://www.aamds.org/ and ask for advice or guidance.
Or post this question on Facebook's
https://www.facebook.com/BandOfMothe...AplasticAnemia
Hope this helps