We had each other, and then we had Lily, and now we have everything. Lilliana has tuberous sclerosis. This is our journey and our fight of this disease. And more importantly, our determination to live well and fully in spite of it!
Wednesday, January 13, 2010
Friday, January 1, 2010
Starting Sabril
Lily was, as always, quite a trooper. Cook Hospital found multiple cortical tubers (a type of tumor) in Lily's brain. They have decidedly given a diagnosis of tuberous sclerosis. We have started the drug Sabril, which seems to be working quite well. Hopefully we can avoid hospitals for awhile and just have some fun!
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