Today's the day

True definition of Rockstar. 

Years of speech,traveling and assessments have all brought us to this day. With a happy heart today is Brinley's last day at the Deaf and Hard of Hearing preschool. 

When we made the move to Socal last summer she was attending 5 days a week. She made quick progress. Before we knew it she dropped to 3 days a week at DHH. We enrolled her in our local CDC Full-Time Preschool the other 2 days. It's always been extremely important to us that Brinley gets her role modeling from "like hearing peers." Putting her in this environment was scary at first not knowing how she was going to juggle going to two different schools who had two very different set of rules. 

She flourished.And adjusted.And was happy. 

At the start of the new 2013 school year went switched it up again, 2 days at DHH and 3 days in mainstreamed preschool. 

She flourished.And adjusted.And was happy. 

As parents we struggled with moving her from the DHH program, after all she's deaf. Her friends there either have cochlear implants or hearing aids so Brinley wouldn't be so different. It's safe. She felt safe.Or was it we felt safe as parents knowing she wouldn't be so different? 

My last visit to her DHH class left me with questions. Brinley had taken on a motherly role to the other children. Her language had surpassed her other classmates so she evolved into a helper for the smaller children. The classmates were using Brinley as a role model. Brinley WAS and IS different, even at DHH. What was a good fit a year ago isn't necessarily a good fit now. 

Last report card from Brin's mainstreamed class 

Brinley exceeded expectations in key areas:

Relationships with peers and adults

Seeing diversity in herself and others

Empathy 

Problem Solving

Social Development

Fine Motor Skills

Writing 

Spelling

Speech:

Above Satisfactory

Brinley is flourishing.And adjusting.And is happy. 

                                              

 This morning we walked to the bus stop for the last time.

 We live in a great new city 

with a school district that has far surpassed all our expectations

Her future looks bright!

Bubble Bath & Progress

Last night was great. While giving Brinley a bath I had a full on conversation with her. She's understanding more and more with each day. I tried to video a little on my cell phone. I'm repeating back everything she's saying so she hears it twice. 

-It's progress-

April 20th, 2013 will mark 3 years of hearing. Something to celebrate! 

CLICK HERE TO VIEW-----> http://youtu.be/9KwF1Ss8u3k

What a "doll"

Another year behind us!

So much has happened since our big move to LA. 

One big recent event? Brinley turned 4!

The sun peeked out just long enough for the kids to play outside.

What a fun party American Girl Doll party we had with a bouncy house, tons of crafts and last but not least some great friends. 

                                       

     A little update on Brinley:

She is attending a Deaf and Hard of Hearing Preschool 3 days a week and recently transitioned into a mainstreamed Preschool the other 2 days a week. Of course I was a little concerned with how she would adjust to hearing peers but her teachers comforting words last week were music to my ears!

According to her Brinley is doing amazing. She jumps right in to try something new, a great listener, follows directions and makes friends easily. Last week a litte boy was in class sitting in the corner crying because he didn't want to put his shoes on. No idea what the circumstances were but I guess the Mom gave up fighting and sent him barefoot with shoes in backpack. Brinley's teacher said Brin walked over to the boy, grabbed his shoes and tried to put them on over her shoes...then started losing her balance and falling down on purpose and giggling . She did this 3 or 4 times until the boy started laughing hysterically and what do you know...He put on his shoes and followed Brin out to the playground. 

It's moments like these that capture my heart. 

Brinley is goofy.

Whinny at times.

Sly.

Smart as a fox.

Empathetic.

Determined.

Sweet as pie.

Mommy and Daddy are SO PROUD

Update in the Modesto Bee

http://www.modbee.com/2012/08/17/2334514/an-ear-for-musicimplants-allow.html

Swim Baby Swim

Well...It's the time of the year that I've been dreading, SWIM LESSONS!  I mean I'm totally excited about swim lessons but just stressing on how we can waterproof Brinley's "ears".  I want her to hear while her swim instructor is giving directions. I finally found an adult size swim cap that is stretchy enough to pull over Brin's head and cochlear implants! Worked like a charm. Just had to share this.

Brinley was SO excited to swim...The second the teacher would start talking Brinley would raise her hand and yell "I DO, I DO"! Haha. I think she wanted to be the first one picked but she didn't even wait for the question to be asked. It was so cute. And of course there's Danica trying to pull her arm back down telling her it's not her turn  :) I chuckled the entire time. 

Brin gave it her all. She was determined to splash the most water, jump the highest blow the most bubbles. That's our girl! NO FEAR!

{ "Look Mom, I do it. I swim. I big"}

And last but not least...big sister Danica is by far the best sister in the world!!!  She takes Brin under her wing, asked the boys to stop splashing her sister during class and when Brinley fell behind in the water race, Danica back tracked and took Brinley by the hand encouraging her to finish.

How on earth did Rod and I get so lucky?

 Happy Swimming

Shandra

Olivia the Pig Bash for Brin

Birthday set up at the Yogurt Mill

Rule #49 Red Velvet Cake is simply the best!~ Olivia the Pig

Tables had coloring pages of Brinley as Olivia the Pig....

Olivia the Pig favors

Rule # 114  Never miss a very important party! ~ Olivia the Pig

This is the happiest Brinley has ever been! (thanks to the M &Ms, sprinkle and gummy bear yogurt toppings) Oh, and the hot chocolate!

Glama Rhonda playing tag with the kids to work off some energy 

Seriously the CUTEST group of kids ever...

Brinley is 3. Holy cow! It seems like yesterday I was at Oakland Children's Hospital and got the diagnosis that Brinley was deaf. I remember my Aunt driving home with me from that appointment (and I know she was trying to lift my spirits) but she said something to the affect of  "It's not that big of a deal" and turned up the radio station. I was thinking to myself----- Not that big of a deal? Maybe because YOU don't have to deal with this....you're not the Mom of a baby that can't hear and is deaf. If I could of flash forwarded to Brinley's birthday party yesterday, WOW! I would have viewed this entire process differently. I've had a good attitude and positive outlook (don't get me wrong) but my Aunts comment was right on point. It's not that big of a deal . Brinley amazes us every single day. Last week at school her teacher came running up to me and said while they were rolling play dough Brinley asked "Can you help me roll it, OK?" That's a 7 word sentence after hearing for 20 months. Average for this age is a 2-3 word phrase. Yay Brin! To all the Moms out there that are struggling with a child that has a special need (whether it be hearing loss, ADHD, Autism, or anything else) the most important thing you can do for your child is acknowledge your child's weakness and vow to do everything possible to assist them to becoming the best they can be. I know parents that have got a diagnosis or been told their child might possibly have an issue and the parents blow up, not my child, how dare you kind of attitude....and their child goes untreated.
As each year, each month, each day goes by OUR pride in Brinley (and Danica!) just multiplies~ They are teaching us the biggest lesson there is to learn in life. Patience, understanding, devotion and unconditional love.Can't wait until our little lady turns 4!

Boom shake shake shake the room....

Fly girl in the making? I think so! In the morning I always turn up the volume to get the girls pumped up for a good day at school. I think it's hilarious how some say deaf kids can't experience music appreciation, it's Brinley's favorite time of the day!  Notice Brinley's new choking dance move? Apparently her and her big sister have been playing "doggie" and since we won't let them use a leash, they pretend. Crazy girls!

How stinking sweet is Danica?!!!!??? Brinley is lucky to have such a helpful sister and best friend in D

-Sassy Pants-

Love it!

I sneezeeeeee AaaaaChoooo

Brinley "Bless you Momma"

Me "Thank you"

Brinley "Welcome"

Brinley + Stanford = Love!

It's been 7 months since Brinley's last "tune up" on her fairy ears. I took her for what turned out to be a 3-hour appointment. For 2 years old, she did great! I’m a little exhausted, the drive home took almost 3 hours in rush hour traffic. No bueno!

Diagnosis: Brinley has a perforated left ear drum (hole in eardrum that never closed up from her surgery last year and still has a ear ache in right ear drum with fluid) Poor girl! On the bright side, Brinley sound booth reflected she’s hearing between 20-25 decibels! That’s fantastic since average hearing is set at @ 20 db. If anything, she has average to mild hearing loss. Better than being profoundly deaf as she was a year ago, Dr. said she could stand next to a jet engine and not even flinch. Hooray!!!!

Our audiologist Jan was surprised at the strides Brin has taken since her last appointment. In the video clip Jan has Brinley's ear hooked up to the computer and she gives off a series of internal beeps. When Brinley hears the beep, she puts a block on the pyramid. She’s really growing into her ears and loving to listen. What a gift!

We are doing good on the Ling sounds:Ahhhhhhh, eeeeeee, shhhhhh, SSSSSS, MMM but still struggling with oooo --for all you CI Moms and Speech Therapists that know this lingo. For you CI parents....a fellow CI family created a Ling 6 Iphone application. I downloaded it, here's the format below. Search Ling 6 in itunes.

Brin is exhausted, nighty night!

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.