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!

Amanda and her brother, Joseph

We're well into a gorgeous Southern California spring season!  It's been just over 2 months since I posted my last blog entry.  I've been hanging out a lot on facebook lately and have many photos posted there.  Take a look if you get a chance.  Just click on the facebook icon or go to facebook.com.  It's free and easy to join.

      

So what's Amanda been up to since March?  She's finishing up 8th grade and getting ready to promote from middle school to high school in the fall.  So are these photos of her graduation cap?  Nope!  The cap actually belongs to her brother, Joseph. 

We've been involved in several festivities related to Joseph receiving his Crime Scene Investigation (CSI) Certificate from San Bernardino Valley College (SBVC.)   

First event was Karaoke night at the Korean Restaurant, Myung Ga, with the New Visions Club. This is a club that advocates for SBVC students with disabilities.  Since Amanda and Joseph's dad, Gonzalo and I are also SBVC students, we belong to the club along with Joseph.

       

Did Amanda attempt to sing along?  No way!  Here she is in the background chatting away on her Sidekick with various friends.  Joseph was belting out a tune along with his fellow graduate, Sam.  The next photo is Gonzalo and Joseph "gracing us" with their singing voices.  Sam and New Visions club advisor and favorite SBVC history teacher Ed, both surprised us with their vocal abilities.  They were GOOD!

   

This one is of Joseph, Goldy and Amanda before we left for the next pre-graduation event. The next one is of Joseph, "Rose" and Amanda at a special recognition ceremony for disabled students receiving certificates and degrees.

         

And finally, May 21, 2009 arrived - the day of Joseph's college graduation.   My sister, Kathryn was visiting from Waltham, Massachusetts so we were pleased that she was able to witness Joseph receiving his CSI Certificate.

Joseph has Duchenne Muscular Dystrophy (DMD) and Amanda does a lot to help him..and it's mostly positive.  (It's tempting to poke and torment your brother when he can't poke back.) Amanda had another brother, Chris who died 3 years ago on 06/06/06 at the age of 14.  Chris also had DMD.  As Amanda enters high school as a freshman in the fall, Chris would have been a senior.

I'll post a blog entry of Amanda's June 8th grade promotion.  She is very excited right now because the 8th graders are going on an end of the year class trip to Universal Studios June 1st and she can't wait because she is tall enough to ride everything this time.  She's planning on how to effectively care for her cochlear implant processor on the water rides.  She continues to do a great job of being responsible with her CI and still wants a second one to become bilateral.