If you have been following my blog, you have probably noticed that my daughter L does not look much like her brothers. That's because we adopted her from China when she was one. Around L's second birthday, we found out she was hard of hearing and later found out the cause. Bilateral LVAS or EVA- Large Vestibular Aqueduct Syndrome. Genetic testing showed that she also has Pendreds which is associated with hearing loss and thyroid issues. At the time L was only showing a loss in her right ear which we then aided. Most people with Bilateral EVA go completely deaf at some point in their lives and it often occurs very suddenly. Hearing can also fluctuate which is hard to track in a youngster.
About three weeks ago L woke up and could not hear us without her hearing aid which told me she lost hearing in her left ear. We went to our awesome audiologist who squeezed us in right away and it was true. Over night she had lost 100% of her hearing in her left ear. When tested again the following week she had had some slight spontaneous recovery but that did not last. Then last week, she lost 100% of her hearing in her right ear. My daughter went from functioning normally to being completely deaf in 2 1/2 weeks. Aids no longer work because there is no sound to amplify. How do you explain this to a 5 year old who can no longer hear you. We had been practicing sign since we got the diagnosis but not seriously. I also discovered that L can read lips a little bit. Each day is a challenge and we are now on the path to cochlear implants. I will be journaling our journey from here on out. Please join me but don't judge me. No decisions we have made or will make are done so lightly.