Hanging Tough

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Addie and Ryan are staying strong in Denver. Today Addie received a large gift bag full of some great gifts from The Ronald McDonald House there at the Hospital. The chyle continues to produce and therefore drain from Addie’s lung. The hope is to get the production of the chyle low enough so we can get her home. From what I know this takes a low-fat diet, time and the medication Sirolimus, which she started today. There is a lot I still do not understand, and I am trying to learn – but there is limited information on Lympangiomatosis and Gorham’s. What I do know is that within the LGDA support group these precious people are called warriors, as each day they wake up not really knowing what battle they may face that day. If all goes as well as possible, Addie and Ryan may return home Sunday. The amazing doctors there are working with the amazing doctors here to make sure we can get her back to Missoula safely – with the doctors here then taking over on Addie’s care. ¬†Looking forward to their return, Michal