Amanda update-March 10, 2010

What have we been up to since my last post in early August?? Here are photos from some of our activities.

We went to Universal Studios, Hollywood later that month. Here are two photos from that day.

At the end of August we were working in a jigsaw puzzle. Amanda decided that she needed auditory stimulation so you can see her working the puzzle in this photo with her iPod and headphones. She was multi-tasking very well! She also had her Sidekick, which has since been replaced with an HTC Hero from Sprint because we got fed up with T-Mobile.

In October, we went to San Bernardino County Museum. Amanda LOVED listening to the bird call display. She could push a button to hear how different birds sound. She thought some of them sounded really WEIRD!

Here she is playing a game after her haircut and fancy french braids.

In February we went to Terp Expo in Irvine, California. Since my retirement from being a Teacher of the Deaf two years ago, I have been interpreting and pursuing my National Interpreter Certification (NIC). The last day of the expo, I took Amanda with me and she had a blast! Where else could she spend the day where EVERYONE could communicate with her.

While I was attending workshops she was hanging out and being silly with some of the staff. They were great with her!

Here she is with Peter Cook, fabulous ASL storyteller!

She also got to see special ASL Performances starring Peter Cook, Keith Wann, Crom Saunders, and Branton Stewart. She was thrilled when they posed with her after the show.

In March, my son, Joel came for a visit on leave from the Navy.

Here she is with her brother, Joseph. He will have a tracheostomy tomorrow.

Can't have a blog posting without a photo of chihuahua, Goldy!

JULY HAPPENINGS

So what's Amanda been up to during the month of July? Lots!

July 3rd we went to Long Beach Aquarium of the Pacific. I didn't even notice until I uploaded the photos to my computer that her magnet cover matched the coral colors exactly! You will notice Amanda's new braces on her top teeth which she got June 26th. For photos of the process of getting her braces you can check out my facebook photos by following this link:

http://www.facebook.com/album.php?aid=28332&id=1278145675&l=497c67995e

On July 12th we had the fabulous experience of meeting

Evelyn Gardner at Disneyland! She is as gracious in person as she is online. Evelyn is a bilateral cochlear implant user who has been a strong source of support for many!! It was great to meet her! July 14th was the first Amanda's anniversary of her CI surgery and Evelyn had offered much support and encouragement in the whole process.

For more photos posted on facebook of our meeting with Evelyn, follow this link:http://www.facebook.com/album.php?aid=29792&id=1278145675&l=fb02e21621

July 25th was Amanda's 15th birthday!

We had a family birthday BBQ and swim party.

Amanda also invited three of her deaf friends from school. Amanda and the two girls, Sisilia and Dominique will both be starting high school in the fall. The boy, David is entering 7th grade. The money Amanda received as gifts will be used for Amanda to buy a new laptop with a built-in camera. She wants to use it to have ASL video chats with her deaf friends. To see more facebook photos from Amanda's party follow this link:http://www.facebook.com/album.php?aid=31189&id=1278145675&l=aab4d3a149

July 31st was

Amanda's last

day of summer school. Daddy's Rock Star arrived home and then to beat the heat we got relief from by spending time in the pool. To see more photos from that day on facebook, follow this link: http://www.facebook.com/album.php?aid=31684&id=1278145675&l=2c460684e2

Second CI for Amanda??

Today we had an appointment with Amanda's CI surgeon to discuss the possibility for a second implant. It took us an hour to drive to LA and three hours to drive home and the bottom line is that today was a bit of a disappointment.

Amanda has wanted a second CI before she even got her first one a year ago this month. There was only a brief period of time during her recovery period and before activation that she had to think twice about going through it again. But that quickly subsided and she was right back wanting the second CI again.

In our meeting with her ENT today, he was unconvinced that a second CI would benefit her speech production, which he said was the reason second implantations are performed.

We had brought documentation from her school audiologist and speech pathologist (who have both known Amanda since she started at the school at age 3 and was a student in my class) showing that she had made considerable progress in the areas of speech and listening since her CI.

Nothing about Amanda has ever followed a typical pattern. And even though she only has three electrodes active, has facial stimulation if she turns the volume past 11:00 and can't hear her own voice...Amanda is thrilled with her cochlear implant. It has made a huge difference in her life.

She now watches television with the volume on, has favorite songs on her iPod (she especially likes drums), she can hear people talk, buzzers, bells, helicopters, traffic, her dog, Goldy's dog tags, dogs barking and many other environmental sounds although she can't always localize them.

In addition to her increasing ability to hear and identify environmental sounds, she has made tremendous gains in closed set speech detection, identification, discrimination and comprehension. And her speech production when combined with visual cues has improved as well. If something is written, she can read it with a fair amount of intelligibility and combining auditory with visual cues (lipreading & visual phonics) she can correct her speech production errors.

We believe Amanda deserves a chance to see if with a second implant she can have more electrodes active, be able to hear low frequency sounds, hear her own voice, and experience less facial stim. This will increase the chances that she will be able to make even more progress with her speech and listening abilities and pick up other environmental sounds.

The plan right now is for his audiologists to do a series of tests before he decides to do the second surgery. We will be contacted for an appointment and go from there.

If anyone has any wise words of wisdom we'd be happy to hear them.

Amanda is officially a high school student!!

Amanda's Middle School promotion ceremony yesterday was fabulous! Can't even believe she'll be in high school in the fall!  It's been 11 years since she was my student in preschool where we first met.

Here is Amanda walking into the Social Hall as the promotion ceremony began. She survived 8th grade and the first year of her CI among many who don't exactly think kindly of cochlear implants and those who get them.

Here she is walking onto the stage to receive congratulations from the Superintendent, Director of Instruction, Guest Speaker and Director of Residence. She also received her hard earned 8th grade diploma.

 

Her good friend and fellow graduate, Sisilia and her family made candy leis for all the graduates.  They also made flower leis and head pieces which they shared with Amanda.  The girls were really weighted down. Sisilia is a year younger and maybe 3 heads taller.

   

Joseph was really proud of his sister.   So proud in fact, he didn't even complain, too much, when she adorned his head.  She likes to share.  :-)

        

And of course you gotta pose with the family in attendance.   Here are Amanda's mom's mom and her husband, her mom's sister and her daughter...and Gonzálo, Joseph and me.  Missed my sons, Amanda's stepbrothers Joel and Trevor...but they're off in other states with their own commitments.

   

Here is Amanda posing with her Middle School Principal for three years, Tammy Mitchell.  Amanda received the 8th Grade Principal's Award this year at the awards ceremony last week.  :-)

     

And last, but certainly not least, are Amanda and me after lunch at Souplantation.  A great end to a great day!

Busy Week!

We have had a VERY busy, very fun week!

Sunday, May 24th we went to the beach, which is something we don't do very often because sand and a motorized wheelchair don't mix very well.  My sister was visiting from Massachusetts as well as my brother's son and his family from Colorado.  So my nephews were having a get together at the beach and we hadn't seen some of them in a very long time, so it was a golden opportunity to get together.

First photo Amanda, Gonzalo and Joseph on the Santa Monica Pier.

We met this family that had the cutest little chihuahua complete with sombrero so I had to take a picture of them!

It started getting cold so Amanda, Joseph and Gonzalo are covered up and watching the beach fun.

We stayed until dark and as we were leaving Amanda and I tried to get a photo of us with the lit up  ferris wheel in the background.

                  

Monday, May 25th we went to my brothers house for a family gathering.   My nieces and nephews prepared a song entitled, "It's Good to be a Geek" for my nephew who was celebrating his 25th birthday.  It was a great time for my brother, sister and me to be together!

            

Wednesday, May 27th we went to Disneyland with my nephew and his family from Colorado. Here they are around my mother's brick that is between Disneyland and DCA.  Amanda was very mindful of her CI and brought a baggie to put it on when we went on Splash Mountain.

             

Thursday, May 28th, we went to Disney's California Adventure with same nieces and nephews. Here we are WET after having ridden Grizzly River Run.  And here are the brave souls getting ready to take off on the Maliboomer.  I prefer to stay on the ground and take pictures.

         

Friday, May 29th we went to Anaheim Convention Center for the annual Abilities Expo.     Joseph mentioned to the Permobil people that his right front tire was making a strange clicking noise.  They replaced BOTH front tires AT NO CHARGE!  We had never seen a wheelchair jack before.  It was fascinating!

      

And tomorrow, Monday, June 1st Amanda is going to Universal Studios with her 8th grade class for the end of the year trip.  She wrote a new blog entry about it yesterday. amandakristineconde.blogspot.com

I posted a lot more pictures on facebook.  Go to www.facebook.com to sign up.  You can find me by my email: jenniferbrunoconde@sbcglobal.net.  My ID is jenniferbrunoconde.  

We had a great week!  But we're TIRED!