Tag Archives: deafblind
A Difficult Day
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 […]
Because Of You
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 […]
Tough words to hear, “Legally Blind”
So as it turns out, my assumptions at story-time were correct. We went to Perkins School for the Blind last week for a visual assessment, and the results were not what we had hoped for. We were told that Rebecca’s visual acuity is 20/190+ and that she is right on the fence of being legally […]
Feeling Like We Don’t Belong
I took Rebecca to story time this morning as I usually do on Thursdays. We walked in and sat on the floor with the rest of the moms/grandmothers and their toddlers. A few minutes into story time Rebecca was curious and got up to go look at something at the back of the room. A […]
Update (Beth)
Rebecca is doing amazing. She can sign over 40 words now, and she can say “Mama”, “Dada”, “no”, “hi”, “bye-bye” (which comes out more like “die-die”), “Papa”, and she is very close to saying “Grandma”. Rebecca is walking all of the time now, and considering her lack of vestibular function, she is doing a great […]
USH Connections Conference
This Thursday we head to the 9th Annual USH connections conference in Chicago. It will be the largest Usher Syndrome related event we have been to. Along with 200+ other people, both families and individuals affected in some way by Usher Syndrome. We will be travelling with mixed emotions, on one hand we […]
What A Night! Thanks For Helping Us In Our Efforts To Find A Cure For Usher Syndrome!!!!
What an amazing time we had last night with more than 200 people!!!! I can’t thank you all enough for coming out and supporting our cause, all while having such a great time!!! I would like to thank the most incredible DJ, Ken Souza from KJ Tunes of Fairhaven, for rockin’ the house with his […]
The World is Not Ready For Her
This is a TED X talk by the CEO of the Perkins School For The Blind, Dave Power. We have a teacher who comes out from the Perkins school once a month to work with Rebecca. For folks who do not know, the Perkins School For The Blind is where one of the most well […]
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 […]
Memories for Rebecca 