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


Saturday, August 28, 2010

Is no news good news??????

Finally, after a 14 week wait I get "the call" from Stanford Genetics
Dept. They have Brinleys results back from her Genestics testing. I've
been preparing myself for this phone call- What if they tell me
Brinley has one of these hearing loss syndromes that also takes her
vision? What would I do?nHow would I react? I just want answers as to
why this had to happen to MY Brinley.
Long story short......they found 2 rare genes in Brinleys testing
however at this time (coupled with current technology) there's no way
to connect her rare genes specifically to "hearing loss". So pretty
much they don't know why she's deaf. No idea if other future siblings
are at risk. No answers. Just a "let's do further testing in a year or
two".
I'm devastated.
I didn't think I'd take this so hard. There's tons of deaf people out
there that don't know the cause of their hearing loss. Why can't I be
ok with not knowing and just accepting this is how it was planned to
be? Do I have another child who is at risk for being deaf? Can I
handle another CI surgery? All the planning? All the fighting with the
insurance companies? All the trips for pre-ops and mapping? I'm not
going to lie...... It's exhausting. HOWEVER, and it's a big HOWEVER-
today I studied Brinley. As she laughed, and cried. As she rocked her
baby to sleep and played house. As she slid down the slide, and
attempted to read a book. As she followed Danicas lead and tried to do
Gymnastics, summersaults and all. Watching her in speech therapy
making progress or running to hug her sister when she's sad- Tonight
we dressed up as fairies and Daddy took the girls flying around the
house! So fun! When it was time for bed tonight Brinley grabbed my
face with both hands, planted the biggest kiss on me and then
proceeded to giggle and cover her mouth as if she was shy. She is such
a special and loving girl and that moment will stay with me for the
rest of my life. We are blessed with Brinley who has come into our
lives and in my opinion- made life worth living. Hell with results.
Live in today.

1 comment:

  1. Miss her adorable face. (And yours!)Proud of you for a million reasons but reason one-million-and-one is staying so positive under the circumstances. Your girls are so lucky to have you:)

    ReplyDelete