New Year, New Outlook

We are just getting started on Brinley's journey...
Dec 2009 we got the diagnosis of profound bilateral hearing loss. English Terms: Brinley is deaf.

I'll be documenting Brinley's progress every step of the way. This will be my outlet in getting my thoughts on paper (well, computer) and maybe you will get something out of this too. You will learn what it means to be deaf, possibly be inspired to pick up a few sign language books or next time you see a child with hearing aids or Cochlear Implants you will know what it took for that child to get where he/she is today.

Modern technology is amazing!

"HARD DOES NOT MEAN IMPOSSIBLE"
Brinley Shay Reiswig

Sisterhood

Sisterhood

If we only knew then what we know now...

ALL SMILES WITH MY HEARING AIDS

ALL SMILES WITH MY HEARING AIDS

Mommy's Angel

Mommy's Angel

Upcoming Appointments

Jan 7th, Modesto

2:30pm Meeting with MCS/ SCOE Early Start Eval.

Jan 15th, Oakland
9:00am Speech Therapist Apt
10:00am Family Psycologist Apt
2:30pm First Audiologist Apt with Sara
3:30pm Meeting Dr. Murray, Implant Surgeon

Jan 29th, Oakland - Sedated CT Scan





Stanford here we come!


Feb 9th Meet Surgeon Dr. Blevins, get surgery date


Monday March 29th, 5 hr Surgery at Stanford

Activation 4/20 and 4/21

Follow up 5/17 and 5/18


Tuesday, September 28, 2010

A phone call changes everything...

The morning we left for vacation I got a call from a Geneticist at
Harvard in Boston. She has news. Brinleys further testing revealed
mutations in two different genes (MY07A and CDH23) unfortunetely these
are Usher Syndrome Genes. For those of you that don't know what Ushers
is- it's complete or profound deafness at birth or profound loss by
age 1, balance problems and full vision loss by early childhood (age 5
or 6 however some make it to late teens before legally bling) Yes, it's a Deaf-Blindness Syndrome. I was told she
doesn't have Ushers in the common sense because both genes would need
to be affected and she only has one mutatation in two separate genes.
So complicated. Fast forward- the call was to inform us Brinleys
results were so rare, they have never been seen before nor do they
have any documentation on it. "Uncharted Territory". This now leaves
us with alot of questions. We're not sure what these mutations mean or
how they will impact our life but there's no looking back now. Only
looking forward-
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1 comment:

  1. Team JonesOctober 7, 2010 at 2:45 PM

    Hey Shandra,

    Just checked in on your blog. Thinking of you and your family and your upcoming move. Praying for you guys and hopeful that Brinley continues to do well.

    ReplyDelete

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