Tag Archives: usher syndrome
It’s been far too long since I have written last, and there have been so many changes. Rebecca transferred from her AMAZING preschool, Clarke School for Deaf and Hard of Hearing, to our hometown public Kindergarten school, the MECC, just a few short weeks ago. Rebecca learned so much at Clarke, she gained confidence, she […]
Help us fight back against the darkness and find a cure for Usher Syndrome.
Forty years is a long time. For all forty years of my life, I have had one constant friend, who naturally after all of these years, I consider family. How many of you can say that you have had the same friend for every year of your life, from the day you were born? I […]
Despite all of the challenges…..the device failures, the vestibular loss and struggle to balance, the too-frequent falls with bloody noses and a scraped face, the night-blindness, the communication breakdowns, the constant struggle to learn more in as short amount of time as possible, and all of the appointments……… Rebecca is thriving. There may be falls, […]
Got this notification wearable a lot further than I expected. Still needs a ton of refinement before it will be usable but I would say this is about halfway to being a viable tool for Rebecca to wear. Next step with this is to reconfigure the hardware so that it can be embedded into a […]
Building a haptic watch for Rebecca while she is going through cochlear implant revision surgery to enhance our ability to communicate.
We found out today that both of Rebecca’s cochlear implants need to be ex-planted and re-implanted. We are heartbroken. The feelings are bringing me back to a time not too long ago when Rebecca had not yet heard a single sound. She hadn’t heard a bird chirp, her sisters laugh, or her mom tell her […]
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 […]