Category Uncategorized
Adapting the World to Her -Jake
When Becca was born and we found out she was deaf I knew that the world was not going to adapt to her needs so I started thinking about ways that I could make the word a bit easier for her to navigate. When we found out that she would also lose her vision the […]
Update (Beth)
Two months from today Rebecca’s implants will be activated, it seems hard to believe that she will hear us, in just TWO MONTHS!! Unfortunately we have to get through the surgery before that happens, but she will be ok, she is in good hands at Children’s Hospital. During her surgery the ophthalmologist will take a […]
Unexpected Test Results (Beth)
Rebecca had an appointment this week with Ophthalmology at Children’s Hospital in Boston. The test involved us sitting in a pitch black room for a half hour, and then lights of different degrees of brightness being shown to Rebecca to see whether or not she could see them. From what the doctors have told […]
Stuck In the Middle: The Cochlear Implant Debate
From the perspective of a hearing parent raising a deaf daughter I want to share our experience with choosing cochlear implants for our Rebecca and some of the controversy that surrounds it. I expect many already know, but to briefly explain; A Cochlear implant is a small device much like a hearing aid that provides […]
Story Time
Unfortunately all of the play-groups for deaf babies are pretty far away, the closest one to us is in Framingham, which isn’t close at all. When Reagan was a baby I took her to story time at the library every week, and she loved it. We practically lived at the library when Reagan was a […]
Hope Pen Give Away
Last week we asked folks to share our blog to help raise awareness for Usher Syndrome, and for everyone who shared it we were going to enter their name into a hat and pick one winner of a hope pen. We are happy to announce that because of all of you, there are now […]
Update on Rebecca (Beth)
There are three areas that Usher Syndrome affects, hearing, vision, and the vestibular system (balance). Rebecca receives physical therapy weekly as she has severe to profound vestibular loss. Rebecca is doing great with physical therapy, she has made so much improvement in such a short amount of time. Her physical therapist, Monique, is just great, […]
10-10-16 Vision Walk, Pens for Hope
We are going to be raising funds for next year’s Vision Walk which supports the Foundation Fighting Blindness and one way we will be doing that is to offer these hand made pens as gifts to anyone who donates directly to the Foundation Fighting Blindness over a certain amount. We will provide more info when […]
9-30-2016 Seeing the World Through Her Eyes (Jake)
When chatting with a coworker via email recently about Rebecca’s condition I typed something along the lines of, “When her world goes dark and she can no longer show us the world we will take the lead from there”. I didn’t think much of it at the time, but then I realized how […]
9-26-16 Overcoming Usher Syndrome (Beth)
As I nurse Rebecca, she stares up at me with those beautiful blue eyes, and I stare back at her. I can’t help but think of the dreadful day when her gaze no longer meets mine. Time goes by so fast. Before I know it she will be 7 years old, and like with Reagan, […]
Memories for Rebecca 