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

http://www.lifeprint.com/

This is a fabulous website for ASL (American Sign Language) I'll be asking my family to visit it and learn some key communication words. It's alphabetical, thousands of signs and someone is actually showing the signs to make it easy. Check it out!

First "real" appointment

After months and months of frustration with Kaiser, incorrect diagnosis's we finally found our angels. OCH (Oakland Childrens Hospital) has been beyong amazing. All the nurses and staff are so helpful. Some even calling me from home on their off hours to see how Brinley's last appointment went.

Brin's diagnosis still came as a shock. We thought she might have some hearing loss but I will say I wasn't prepared to hear she's deaf. After I sobbed and picked myself up off the floor I decided I can't feel sorry for myself, or Brin. I needed to be strong and be her biggest advocate and supporter. From that moment on I haven't looked back. Hounding doctors office's, fighting with the insurance companies...I do it all!

***Next apt is Jan 15th with the Psychologist