Went to immunologist today and he said he is going to up her treatments to keep her safer through flu season . He said only shots she can get are syniges for RSV. He thinks the missing link that we are looking for are in the tests we did a few months ago that should be back any time now. He said it is a genetic mutation that causes almost all of her issues but we just need to find out which one. He was really impressed with her progress and is super hopeful that with proper treatments and therapies she will live a fairly normal life! Yay!!! Increased treatments start next week! Addie has had little bites of foods two different days this week. She swallowed the purée like a champ! Cant wait to get to the swallow clinic and continue on to bigger meals :) go buggie go! Addie you are such an inspiration of strength, persistence, and dedication. Love you so much!
Posted on: Sat, 30 Aug 2014 02:49:02 +0000
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