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 […]
Why I need to stop apologizing for my extra needs child.
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 […]
Technology is not always designed with people with extra needs in mind but with small tweaks to existing devices, solution can be created that can make a huge impact in someones life.
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, […]
So we now know that Rebecca’s cochlear implants will be replaced and the date for her surgery is scheduled for June 4th. Both will be removed and replaced which will add to a growing list of failed implants. Leading up to the determination that Rebecca will be re-implanted we have been following the failure rate […]
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 […]