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.

The Aftermath

The Aftermath. This was the worst part for me. Due to Brin's CSF leaks her surgery was much more complicated and elaborate which ='s more pain and swelling. The first day of surgery wasn't bad. Second day I think I almost fainted when I took Brinley's earmuffs off. Her head was so swollen, almost alien like. Her eyes started turning black and blue with bags underneath that would put Joan Rivers to shame. Very scary for a Mommy to see her baby girl in such bad shape.

Waiting Game

Time went by SLOWLY, and do I mean slowly. The girls talked about everything under the sun. Five straight hours to catch up on nails and the latest celebrity gossip. Oh, and to check the surgery patient board. Brinley was 107440. Gigi had the great idea to push two chairs together and Danica ended up napping for 2 hours. Finally over 5 hrs after the surgery began, it ended.

In good hands...

Rod gave the Anesthesiologist and run for his money. He asked all the questions...I just cried. The ER nurse came in with the Surgeon to take Brinley. Rod and I watched them walk down the hall, until we couldn't see them anymore. Then the excruciating wait began.

Pre-Surgery

Arrived in Palo Alto on Sunday in prep for the big day. Enjoyed our hotel for a bit before heading out to dinner and having thee worst dining experience in history at Chili's. Both sets of supporting Grandparents were in tow, Poppa Harley, Glama, Gigi and Poppa Golf. Can't forget Uncle Trevin and Courtney (more pictures to follow) Late Sunday I got a call our surgery was pushed back from 6:30 to 8:00am. We arrived at 8 (with a hungry and thirsty baby don't forget) and were told "there's been some delays". So.......we walked the halls and tried everything in our power to distract Brinley. Her surgery started at 11:40am. Dr. walked out at 4:51pm and took Rod and I into the consultation room. Dr. Blevins stated Brinley was a strong girl. Surgery went good however they had a few unexpected issues arise. While drilling into the skull bone Brinley had a CSF leak (spinal fluid leak) Dr. took tissue and muscle from another part of her skull to cover and stop the leak. Second ear, same thing. Another CSF leak. Odds of this rare complication happening? Less than 1%. Need I say more. So, we're home. Brinley is slowly recovering. Really swollen, two black and blue eyes. For the past 48 hours I've questioned if I did the right thing. This, after all, is an elected surgery. Then, reality hits, and I'm thankful for my resolve in pushing for this surgery. Grateful for the wonderful surgeon and hospital that took care of Brinley and thankful we have this modern technology. There's many deaf people out there that ferociously argue the CI route. God wanted her deaf, so she should stay deaf. I see it this way.... If I had cancer, I'd try and treat it with chemo. If I lost a limb, I'd use a prosthetic. If I had poor eye sight, I'd get laser eye surgery. If I was deaf, I'd get Cochlear Implants. Simple as that. I hope Brinley reads this blog one day and feels great joy with our decision as parents. We'll have that conversation down the road. So looking forward to it....

Hats off to ya!

Just wanted to share my favorite item these past few weeks. Brinley has come to HATE her hearing aids so it's been a struggle keeping them on during the day. A good friend of mine made Brinley some beautiful custom hats to match all her outfits. These hats are perfect!!! Not too tight. Fit just over her ear enough to secure her hearing aids (will work for CI's too) plus....hello....they are adorable! Here's a picture of Brinley rocking one of the hats. You can't even tell she has her aids on! My friend has an Etsy shop. She makes these hats and matching sister bows. Let me know if you'd like her contact info

Surgery Date & Set Back

Talk about a LONG day. 5 hours in the car + kiddos barely napping + pouring rain outside + bad news = breakdown! Good thing Gigi came along with her bag of snack and crafts to keep Danica occupied while Brinley and I got down to business. We had a setback today. Brinley was getting good sound from her hearing aids over this past month but her new test today showed what little hearing she did have has vanished. Hearing aids are no longer assisting her. Total silence. This is hard because my spirit have been lifted the past few weeks knowing she's hearing some speech however that's not the case. Might be a quick progressive loss, still don't know the cause, just desperately want to try and "fix things". On top of the bad news, surgery was set back to March 29th since the Dr. had a full schedule. So we wait.

CT Scan is over with....bye-bye Oakland

Just an update for those of you asking about Brinley's apt.'s last Friday. She did good for what was expected of her. Poor girl didn't eat for 19 hrs (7pm Thurs night to 2pm Friday afternoon) She's amazing, anything else would be an understatement.
Look at the pic, she even flashed a smile as both hands were bleeding from IV's!Her big sister Danica was pretty grumpy when I took her picture. You wonder which child just had anesthesia! Ha!We did have one minor set back. Our surgery was scheduled with Oakland Children's for Feb 26th, both ears. I was just informed that they will only be doing surgery on one ear and will put her other ear on a waiting list for 6mo down the road. Reason? "Administration change in policy". Real reason? $$$$$$$$$ I was told my insurance company (Blue Shield) is slow to reimburse, however they do reimburse. Pretty annoying. Anyhoo, I worked even harder to get Brinley's surgery transferred to Stanford and today, whhhhhhhaaaalllllaaaaaaaaa. I've accomplished just that. We have a meeting with Dr. Blevins Feb 9th at Stanford and will get a tentative surgery date for BOTH ears at that time! This is really great news for Brinley, and for Mommy. I can stop stressing so much. Talk Soon~

Hoooray for hearing aids, well, kind of

So last Friday was beyond busy for us. With Daddy, Glama, Gigi & Great Grandma Sheepie (and big sister Danica) we headed for a full day of appointments in Oakland. Last apt. of the day was putting on Brinley's hearing aids. I was really worried about how she'd react to sound but it was a momement I'll never forget. The audiologist put Brinley's "ears" on and asked me if I was ready? I nodded yes. She clicked activate...... Brinley froze. Her eyes (already big mind you) tripled in size. She looked at me, looked at Sara the Audiologist, looked at me again and smiled. One of the best moments ever in my life.
With the help of hearing aids Brinley should be hearing at about 42 decibels. Normal hearing is under 20. You hear water dropping out of a faucet at 15 dec. While Brinley can't hear everything we have reason to believe she can make out most speech. This is great! We are giving her as much sound and sensation as possible in preperation for her big surgery which has been pushed up to Feb 26th. Right around the corner!!!!

We also had the pleasure of meeting Susannah and Monrovia (AKA Little m) I met Susannah on CiCircle Support Group and finally got to meet up at a coffee shop in Oakland in-between appointments. I was really inspired by the entire CI process after seeing Monrovia in action. She didn't miss a beat, even informed us when the phone was ringing. It's Moms like Susannah that take the time out to help "newbie" Moms like myself that really make a difference. Many thanks! Hopefully I'll be able to do the same for another Mom down the road. <3

KCRA News segment/ Early CI's in kids

This is a great example at how CI's are working in young children. Check out the 2 minute video.

http://www.connectwithkids.com/tipsheet/2009/470_dec30/thisweek/091230_cochlear.shtml

Bionic Ears- Time to get informed!

Friends and Family have asked what Cochlear Implants look like, how they help, etc. The link will take you to the Cochlear America's website where you get detailed information as to how the device works.

The picture, well, that speaks a thousand words.

http://www.cochlearamericas.com/nucleus5upgrade/for_kids.html