1 year Anniversary

April 20th marks the anniversary of Brinley's activation of sound, 365 days of hearing. I'm nervous and super excited about making it to this point. A year ago when we were told Brinley was deaf I was extremely depressed and thought to myself "what in the hell are we going to do"? My thoughts were what kind of life will she live? What does this mean for Danica? In a way I felt a little jipped, mad at God for not making my child "perfect".
MY OHHHHHH MY how time changes everything. I pray every single day (more than once) to God and thank him for my daughters. They are both perfect just the way they are. I've accepted this fact and my life has been able to move forward at lightning speed. So has Brinleys.

On Brinley's hearing birthday I'll post a short video with her progress. Today in speech therapy her therapist was thrilled, Brinley had 5 new sounds,YAY! For those with special needs kids you Mommies know how we celebrate the small things!

*Driving in the car looking out window Brinley will yell "WOW! Dan-KA (for Danica) CHIRP CHIRP" when she sees a bird or Itty At for Kitty Cat.
*Yesterday when finished with lunch "Mommi, All Dun"
*Looking for our dog "Ju diss (Justice) Where are ooooo (you)?"
*Rocking her baby "Shhhhhhhh, baby Ni Ni"
*Da Da bye bye

These days are so special and I'm thankful to be home. At Target the other day I was pushing the girls in the stroller telling them a joke and laughing when Danica asked me to stop the cart. I did and asked her "what's wrong honey?" Her reply was so precious. She said "Nothing, It just feels so great to have a Mommy". Totally unexpected and beautiful. Our children are a relection of ourselves and by the love Danica and Brinley show others-and while there's always tons of room for improvement
I must say we are doing a damn good job :)

In closing I thought I'd post my inspiration for creating this blog. 16 months ago, the day I found out Brinley was deaf I was driving home from Oaklands Childrens Hospital when this song came on. It took on a entirely new meaning to me and my life. Anyone that has daughter's know that special bond that is unbreakable. Thanks for reading...
-

Proud Momma

I haven't had a chance to blog in awhile. Between my husbands
birthday, preschool, speech therapy, Thanksgiving, Christmas, family
events, Danica's 4th birthday and Brinley's 2nd birthday- I've been
kinda busy! But tonight I feel like talking :)

Brinley is 2. It's been 8 months and 14 days since she's been
"activated". I have many mixed emotions about the process. I mean, I
wouldn't change a thing. Demanding authorization from insurance
company, REFUSING appointments months out and just throwing myself
into the world of deafness. It's been hard on Rod and I. Mentally and
physically exhausting. But at the same time it's been impowering. I
think how hard it is on me and then I feel super guilty. It's not hard
on me----- it's hard on Brinley. She's the one that has to wear her
equipment daily, deal with all the tweaks and issues that come along
with it. The stares, the questions, pre-ops, genetic apts. It
couldn't feel good to wear heavy sound processors over her tiny ears
every waking hour. Or the long hours of rehab and all the extra work
it takes just to "listen". But she's doing it and doing it with grace.

It will almost be 9 months since our daughter has been hearing. She
follows commands for example:

Go get your shoes on
Time to brush your teeth
Its time to take a nap
Jump up at the table
Lets go wash our hands
Give Sissy a kiss
Buckle up
Daddys home
Time for bed
Wheres your baby?
Do you want to go to the park?
Time to go outside
Go get your jacket etc.....

In the last month she's spoken the words

More
Ma Ma Ma
Da Da
Esssse for please
Esssse for cheese when talking a picture :)
Dog for dog
Mmmmmm when eating something good
NO!
OT for hot
Shhhh when putting baby to sleep
Hi
Hey
Uh Oh
Ni Ni for night- night

It's not exactly where I thought we would be at 9 months post
activation but I need to compare her to a 9 month old hearing baby.
They don't say much but babble at this age so when looking at the big
picture....we're on the right track.

<3 Reiswigs

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Light$, Camera....No Action

Everyone around me is buzzing about their Holiday family pictures. Who they're booking with, wanting some ideas on how to pose...but the shocker has been how much money my friends pay for photos. HOLY COW! I've always loved to do my own pictures. I even did my own Maternity shots that turned out awesome. Brinley doesnt care for the camera lately and I've tried EVERYTHING (M&M's, horn, Mommy falling down, throwing a ball in the air, going cross eyed, Grandma doing jumping jacks, phew...tired just thinking about it) and we might get a smile 1/20 times. Today I had my iphone as we were playing in the backyard. I tried to capture the girls silly side. Then playful side. Serious side. I must say for using my iphone camera I love how my pictures turned out. Don't be afraid to try something new, use a new angle, try that picture software that gone untouched on your computer. I hope my girls look back on all my pictures and collages someday and feel the love and energy I put into capturing their spirits <3

What is a sister?

Every Friday morning we start speech therapy at MJC at 9am. At 9:30am we start storytime, playtime, snack time, etc. We head home about 11:30am. Today more than ever I'm just in awe at the bond Danica has formed with little Brin-Brin (as she calls her) In the past 24 hrs I've witnessed Danica helping Brinley put her ears back on when they fall off, grabbing her socks or a blanket when it's cold, sharing her juice, planting a SUPER BIG hug and kiss just because-----but today when leaving playgroup was by far the most touching.
As we opened the car door to hop in the car, Danica (who is destined to be a speech therapist, nurse or teacher) stated

Brinley, open the door, OPEN. OPEN. SAY OPEN BRINLEY.

Brinley looked at her and gave a long "OOOOOOOO", best she can do, and I'll never forget how Danica reacted. She was so proud of her little sister!!!! D turned to her with tears swelling and said

Good job baby Brin Brin, good talking, your the best baby sister ever. Take your time. MOM, did you hear that? Brinley talked for me......

So touching as a parent to see all your hard work pay off. It's not just Rod and I that have to adapt, it's Danica too. She's been so eager to learn sign language and communicate with her sister. Both of our girls are so incredibly special for different reasons.


We are family,
I got all my sisters with me.
We are family
Get up ev'rybody and sing

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-

My Frosted Flake & Pixie Stick

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.

Finally

Our AVT therapy trips twice a week to Delhi are paying off! Brinley is
starting to volcalize more than ever. She says uh-oh when she drops or
spills something, signs and says all done after eating and just today
we got a hellllllllo. She's pointing to what she wants and starts
babbling, it's so cute. Brinley is also understanding more words.
Common phrases she's responding to include:

Time to eat
Where's your shoes?
All done
Winnie the Pooh
Time to brush your teeth
Let's so outside
Where's Daddy?
Where's Danica?
Etc.
The car goes vrooom
Night-night
Sit down

Brin has been hearing for less than 3 months. She used to hate her CIs
at first but this morning when she woke up, she found her ears,
brought them to me and shook her head yes. Baby steps but so worth
celebrating. My deaf daughter is giggling at jokes, dancing to music
and listening to the birds chirp. God is good.

Brinleys 10pm news segment aired on Fathers Day

http://www.ktvu.com/video/23978082/index.html
-OR-
http://211.43.148.137/10001/2C1E3/UNKNOWNLSN_00000051.3gp

Stopping to smell the roses (well,actually lavendar)

Took the girls last weekend to meet up with a friend and her adorable twin daughters at the Lavendar Hollow. Pretty neat place to take your Mom for lunch or catch up with the girls over lavendar lemondade (yes, it was fab!) The kids just ran the fields. I was sitting back watching them play ring around the rosy and I had a moment. Brinley was giggling SO HARD. She was hearing herself laugh which caused her to laugh even louder. She was listening-----

Ring around the rosey
pocket full of posey
ashes, ashes
we all fall down

Brin in the Modesto Bee

http://www.modbee.com/2010/05/16/1168905/implants-changing-life-for-modesto.html

Bathtime

Brinleys favorite time of the day. She signs bath to me all evening
until I give the ok. She runs into her room and collects as many toys
and little animals as she can and throws them all in the tub. She is
so excited to hop in and play in the bubbles, love it!!!!
As for a quick update, things are going OK. Still having issues with
the facial nerve stimulation so we are back at Stanford next Mon and
Tues to try and figure things out. Wish us luck. Our hotel bill these
days staying in Palo Alto every 2 weeks isn't looking too pretty-

The new Bionic Brinley

So, we've come a long way in the past few weeks. Brinley has pretty much made a full recovery. Her new Cochlear Implants are on every waking hour. We are still have issues when they are first turned on. She cringes and cries when the magnets make contact. Our Audi explained that adults with CI's described the initial turn on as a wooooooosshhhh of electricity. I threw together a couple headbands (which have worked wonders) in keeping her ears on. Trying to keep the processors on without the headbands was driving me insane so I'm loving our new system. Being that Brinley's nerves haven't been stimulated before, it's a scary experience for her. With that said we are making progress. Today her DHH Teacher came over and noted Brinley not only responding to her drum and tangerine toy, Brinley seemed to locate where the sound was coming from. That's the biggest thing for us right now, sound association. If the phone rings she has no idea it's the phone ringing. All she hears is a loud and constant sound with no idea where it's coming from. I'm narrating everything I do. "Mommy is pouring a glass of wine, mmmmmmmmmmm, yummy"...haha...you get the drift.
Our weeks are filled with speech therapy, DHH visits, etc. Danica has been saying her stomach hurts alot and I'm wondering if it's just the attention thing. Rod and I try very hard to make sure our time and love is spread even between the girls but Danica must see that Brinley gets more 1-1. Last night I caught Danica in her room trying to put on Brin's toy CI processor on her ear. When I walked in she asked if I can take her to the doctor and get ears like Brinley's. Adorable and heartbreaking all at once xoxo

What is that sound???!!!!????

Wake me up from this nightmare...

Ok, so we have one daughter home from the hospital and the other has just checked in. Danica has been in the hospital since Fri at 7am. They have taken tons of blood and stool samples to find a cause for her severe symptoms. Dr. suggested possible Salmonella. Rod and I are doing our best to flip flop rotations so one of us is always with the girls. This is the worst timing possible. Gigi, Great Grandma Sheepy and Aunt Sandy all help us out yesterday. Dishes were done and laundry folded when I got home. So thankful for any help that comes our way these days. I stepped on the scale thinking I'm wasting away to nothing. To my horror I've gained 6 pounds over the last 2 weeks. What's up with that?????????? Trying to find some humor in all of this madness. Heading to the hospital.