Rebecca had testing of her cochlear implants today and more failures were discovered.
We speak with our voices, but our faces tell the story
Rebecca continues to show signs of internal device failure as shown in the video below. She is reporting that we sound quiet to her and she has been talking much louder lately as she is having a difficult time hearing herself. Its hard to know if this is the result of a faulty microphone in […]
The true impact of testing loopholes in medical device approvals.
Two years ago, we went to our first Annual Usher Syndrome Coalition Conference in Chicago. We were in such a different place than where we are today. While I loved the city of Chicago, I can remember being overwhelmed with worry and fear. Chicago was great, but the reason for our visit there, absolutely terrified […]
Time changes everything, sometimes more quickly than we’d like. When you know what’s coming, you should be prepared for it, right? The time table we were given just doesn’t make sense, it wasn’t accurate. In the beginning, when we were absorbing information as fast as we possibly could, we held onto every word that every […]
Did you know you have the potential to change the world? It starts with finding your one, and I want to tell you about how I found my one and how that led me to create a not for profit called, Adapt the World Labs. I am the dad of two beautiful children, one who was born with […]
It’s nearing the end of our Early Intervention journey, and it’s all so bittersweet. As much as I won’t miss having to make sure my house is (somewhat) clean every day, having people in and out, rushing everywhere………. Once the dust settles, I am going to miss the relationships that Rebecca and myself have made […]
Pets have many benefits, especially for individuals with special needs. For such individuals, pets provide much more than companionship.
We started this blog to bring awareness to Usher Syndrome, mostly in an effort to prepare the world for Rebecca, to tell as many people about her and her syndrome as possible to help provide her with a future of inclusion. We try to keep away from blogging about the negative side of raising a […]