Nevaeh was diagnosed today with infantile hemangioma. It is a non cancerous tumor that developed during the early stages of gestation. Considering the size and growth of it their testing her for a rare disorder called PHACE syndrome. It could effect her little heart if she does. She already had a EKG done on her heart and has to have an ECHO on on her heart in Evansville. She has to come back to Rileys April 10th for the results of her tests. Until then shes on two medications to try to slow the growth so it doesnt impare her vision. If the medications do not help they will put her on beta blockers which can be very dangerous for her age. Based on that they will need to do further treament if it doesnt shrink in two weeks. She will also need to go back before then if her ulcerations get worse because itcancause infection. We still have a long journey ahead of us waiting to know if she has PHACE syndrome and trying to get her tumor to shrink so it doesnt blind her. Please continue to pray for my little girl! Devin Henning
Posted on: Mon, 31 Mar 2014 17:30:11 +0000
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