We are heading back to Chicago for embo number 3. One of the AVM’s to be embolized this time is interosteous. Hopping this will be last Embolization for a while. However they will be doing more testing, due to weird symptoms that Tommy has developed lately. He has been having capillaries busting in his birth mark (staining)area. They will be drawing blood samples to send of looking for a mutated gene that is some sort of new syndrome. Not quite sure yet as we will be meeting with his team of care givers tomorrow. Please keep us in your prayers.
Klippel-Trenaunay and Parkes-Weber patients have mentioned experiencing small bleeds from their birthmarks. Let us know what you learn from the genetic testing.