Monday, June 28, 2010

Was it really life changing?

The AG Bell Convention wraps up today in the sizzling heat of Orlando, FL.  As you read this I'll be taking in three final workshops.  My head is swimming with new ideas to try out in our home.

Yesterday was a marathon of concurrent sessions.  By afternoon my knees ached from sitting in a chair all day.  Was it that uncomfortable when I worked?  I can't remember.

Like school without quizzes or work without pay, the convention has still challenged me in many ways.  I've been taking notes the old fashioned way with a pen and paper.  I've met new people.  I've navigated hallways.

The weekend has forced me to take a break from my usual schedule of gardening, outdoor play, and evening blogging.  It has renewed my love for Pittsburgh.  Even though I'm not specifically homesick, I'm more grateful for all of the professionals and services that have helped with Julia's hearing loss.  Those things are not available to many of the people I've encountered in these few days.

My Sunday blog posts will be easy to write for the coming weeks.  There's a whole list of other blog posts in my notebook.  You can look forward to a rant about public restrooms, expensive hotel restaurants, and my aversion to Twitter.

It's too soon to know if my life has been changed, but I had sure had fun trying.

Sunday, June 27, 2010

Catching lightning bugs before hearing aids

Lightning bugs (fireflies) have been out for several weeks.  Our yard is a perfect habitat for them.  Julia has been out with the neighborhood girls way past bedtime collecting loads of the things in her buggy box.

She is really interested in the specifics this year.  What do lightning bugs eat?  How do they light up?
I figured I'd put off these important questions long enough one day while we were at my mom's house.  I took Julia on my lap to google it once and for all.

Before I opened the browser I spied an item on the desktop of my mother's computer.  It was a video clip called "Lightning Bugs".  We watched an eighteen second clip of Julia seeing the blinking insects for the first time.  She was about 2.  She didn't have hearing aids and we didn't know she needed them.

Julia didn't attempt to speak.  I listened to myself prompting her.  "Look, it's a bug.  Can you say BUG?  Catch the BUG!"  Julia didn't say anything.  She raised her small hands and tracked the flashing creature.

We didn't have a video camera back then.  I'm almost glad we didn't.  The few grainy cell phone/digital camera videos we have are painful for me to watch. 

Some are even more painful than this lightning bug one.

There's a video of Julia pretending she's reading stories aloud to me and Tim and his mom.  She was approximating speech at that time.  Her utterances were combination of a d-sound and vowels. 

We thought everything was okay back then.  Now that video sounds like a deaf child to me.  I wish I'd known then that she needed help.  I wish I hadn't spent a whole year frustrating myself and my baby.  I wish I could go back to that first night she saw lightning bugs.  I'd tell myself to get her hearing tested.  I'd tell myself that she's going to be okay and that in three short years she'll say so much more than "bug".

The best I can do now is to forgive myself.  I'm doing it one grainy video at a time.

Sunday, June 20, 2010

Expectations for AG Bell's Biennial Convention

Sometime last summer, my writing on this blog found an audience among other parents of children with hearing loss.  After some intermittent posts that received a good response, I decided to dedicate Sunday to posts about hearing topics

Then I got a big glossy postcard in the mail from AG Bell.  Their 2010 Biennial Convention was coming up and I felt it calling me.  I was finally doing something beyond living in our little bubble of audiologist appointments, speech therapy, and IEP meetings.  I was interacting with the world and wanting more. 

With support from Prilosec OTC, I will be attending the conference which has been described as a "life changing" event.  Days away from having my life changed, I'm getting pretty excited.

Next weekend will be chock full of the best advocacy and early childhood education workshops to be found.  There will be a whole introductory session to help first time attendees make the most of their experience.  Will I have to choose a learning track or can I mix it up?

My expectations are high.  I hope to learn lots of great stuff to bring home to my Sunday readers.  It's less than a week away.  Did I mention I'm excited?

Sunday, June 13, 2010

The first big girl booth test

At the end of May, Julia returned to the audiologist.  It had been only three months since the last test.  She's on a more frequent schedule because her middle frequencies have gotten a bit worse.

The booth hasn't been a great thing to witness in the past few appointments.  Julia had been difficult to keep on task and didn't seem too interested in feeding elephants, monkeys, dogs and rabbits as part of her conditioned response to hearing a sound.

Our audiologist decided for the most recent test that Julia was ready for "conventional audiometric test procedures".  What a difference!  I think Jules relished hearing the audiologist throughout the testing. 

She had to repeat words for the word recognition test rather than pointing at pictures.  She shouted her responses so loud I wished I had ear plugs.  Julia proudly pronounced every sound in each word.

Conventional procedures call for the child to raise their hand after hearing each sound.  Julia was quite enthusiastic with this one as well.  She did an all around outstanding job.

Last night, I got the two page written report titled: Audiology Evaluation.  It included a new audiogram and a detailed description of the tests and results.  It didn't mention how the audiologist turned down her headphones to keep from having her own eardrums injured by the enthusiasm of my young child.  It left out how proud she was to raise her hand as soon as she heard each "whistle".

Thankfully this post will round out the report because those were details too precious to forget.

Sunday, June 6, 2010

An implantable hearing aid

A "soundbite" in the current issue of Volta Voices caught my eye.  The FDA has approved the first "completely implantable hearing aid".

A visit to the Esteem website proved a bit emotional.  Right there on the first page, two smiling people are fully underwater.  Julia would jump for joy if I told her there's a chance she could hear while swimming some day.

I found a blog, Building My Self Esteem, of a woman implanted in 2008.  From her description, she's hearing much better with this technology.  Her kids aren't getting away with much anymore.

There are all kinds of specifications and requirements, one is that the patient must be 18 to be implanted.  The hearing loss must also be stable.  There are a lot of years between us and any decisions about this kind of surgery.

It's an interesting thing to dream about.