Tag Archives: usher syndrome
Interview With Molly
Jake’s cousin Molly is a Junior at Fairhaven High School. Molly is taking a Media Production Class, and for a Photojournalism project she decided to do an interview on us and Usher Syndrome. Molly is nominated for two student New England Emmy Awards, and she wants to go on to major in Communications. Although we […]
Fundraiser Approaching!
Only a month and a half away and so much to do but we are in really good shape and really excited about a fun night out to help raise awareness about Usher Syndrome, and generate proceeds to help find a cure for blindness. We have had tons of support from friends, family, and our community […]
Interactive Visual Acuity Puzzle (Lea Shapes) using RPi3 and Arduino micro
On one of our visits to the ophthalmologist we were told that we should start familiarizing Becca with the Lea shapes (as to why, you can find more about Becca’s journey here). Because of her retinitis pigementosa, which is a retinal disease associated with Usher Syndrome, she will need to start vision testing much earlier […]
Our Sweet Beccs (Beth)
Rebecca is getting used to her CI’s, as are we. She leaves them alone most of the day, only pulling at them when she’s bored. She blinks when a loud sound is made, and she even wiggles and dances when she hears music! She is making a lot more sounds already, and she seems to […]
Usher Syndrome Fundraiser
In honor of our daughter Rebecca and all others fighting this disease, we are holding a fundraiser to raise awareness and funds for Usher Syndrome, the leading cause of congenital Deaf/Blindness. All money raised will be donated directly to the Foundation Fighting Blindness who are leading the efforts to find a cure for Usher sSyndrome. There […]
Cochlear Implant Activation Day!!
Today was the day we’ve been anxiously waiting for for almost a year, Rebecca’s Activation Day. We went into the appointment very nervous, yet so excited! Reagan wanted her voice to be the first one Rebecca heard, and so it was. Rebecca was busy playing with toys when they turned her CI’s on, and […]
Update (Beth)
Rebecca is doing quite well. Unfortunately her Physical Therapist was in a car accident just after Thanksgiving, so Rebecca hasn’t had PT in quite a while. We’ll be starting weekly PT up at Children’s Hospital next week until her regular PT from Early Intervention is back. As I previously posted, Rebecca has CME (cystoid macular […]
Bittersweet
On Wednesday December 21st our family was invited to an Usher Syndrome awareness event that was being sponsored by Arts for USH. The significance of the date was that it coincided with the winter solstice and occurred on the darkest day of the year. Not exactly sure how many people walked but I believe it […]
Rebeccas Cochlear Implant Surgery day
12-15-16 Today was the big day of Rebecca’s surgery, we walked into this day filled with anxiety and fear but left with relief and hope. It was certainly a scary day for both of us and no matter how many people told us she was in good hands we did not find relief until […]
Mixed Emotions (Beth)
Rebecca’s CI surgery is only a little more than a week away, it’s hard to believe. For so long it seemed so far away, and yet here it is. The surgery itself we are told will be approximately 6-1/2 to 7 hours, and they will need an additional hour to perform a ERG test on […]
Memories for Rebecca 