Tuesday, February 7, 2012

Like Drinking From A Fire Hydrant

That's a bit like what all these appointments feel like. 

But it's so exciting!

Here's what's happened so far...

Warning: long, wordy post.  Get a drink.  Use the bathroom.  Come back later.  Whatever.  I'm documenting this for me and for Tate, as well as sharing it with you.

In late December we saw Tate's audiologist at Children's and had his hearing tested.  As I suspected, he had lost more.  A lot more.  Ten to fifteen decibels more.  At my request, his audie referred us to the CI Team at Seattle Children's and we began the series of candidacy appointments.

On Thursday, Grandma Grasshopper came with Tate and I to meet with the co-head of the program and the psychologist.  I have to tell you that normally I am not a big fan of the whole psychology/psychiatry genre, but this appointment was great.  Actually they both were.  The first doctor talked more about the nuts and bolts of how implants work with hearing. 

Amazing.  That's all I can say.  It's amazing!  Talk about fearfully and wonderfully made.  I knew what the cochlea looks like (a snail shell).  But did you know that if you could unroll your cochlea it would be kind of like a piano, with low notes at one end and high notes at the other?  I had no idea.  So the electrodes slide into the cochlea and snuggle up to the nerve endings, stimulating them directly and bypassing the damaged cilia.  (That's my oversimplified layman's understanding.)

The second doctor (the psychologist) really wanted to make sure that Tate (and we all) understand the process of this.  It's not like having your appendix out, healing from surgery, and voila, all fixied.  There is a lengthy process of habilitation - learning to listen - and training your brain to make sense of the new input.  Granted, Tate will likely have an easier time of this than a profoundly deaf child who has had no previous access to spoken language, but it's still a process.  It's still hard work.  And everyone needs to know what the ride involves before they buy the ticket.

Yesterday I took Tate down to have an Auditory Skills Evaluation, which was interesting to watch.  They want to know exactly what his (language) strengths and weaknesses are.  Sound discrimination, syntax, idiomatic language, inferencing, etc.  Tate rocked these tests, which is a blessing and a curse... 

His speech and language skills are so good that it probably makes it harder to qualify him for a CI, which is kind of like being punished for working hard and being successful.  (Hmmm, some political analogies come to mind, but I'll save that for later.  *eyes roll*)  Still, we talked at length about this, with me making the case that, 1) His language skills are so good because he (well, we, but mostly he) works so hard all the time.  And he shouldn't have to be working that hard just to hear.  And 2) he has acquired a lot of those skills while having significantly more hearing than he has now, and his loss is continuing to progress.

So today (third day out of six that we trek to Seattle and back) Grandpa Grasshopper drove us down to meet with the co-head doc for more audio (in the booth) testing, and then a meeting with the surgeon.  I had been advised that this would take quite awhile and be more in depth than his usual testing, so we were surprised when after maybe 20 minutes of testing speech comprehension on his aided ear, the doctor said she had all she needed.  We headed down to the cafeteria, parked ourselves at a table by the window, and settled in to do Tate's schoolwork while we waited three hours for the appointment with the surgeon.  Not half an hour later the first doc came and found us because after talking with her colleagues she wanted to do further testing. 

Back up to the booth to test his left (bad) ear.  As expected, he has some sound awareness but no speech recognition.  Then they rigged up a loaner HA for that ear and ran the test again, with the same results.  It was kind of funny when they put the HA in and turned it on.  I think it was kind of bugging Tate having noise in that ear, because that's all it was - noise.  Nothing really beneficial.  We weren't sure if he could even tell if he was getting feedback or not.  After a few minutes he said that the "rumbling" in his left ear got louder when we were talking, so we figured he must be "hearing" our speech.

The doc asked him to leave the HA in for an hour, and then come back up and run the test in the booth again.  Alrighty.  You hold the hoop, and we'll jump.  But to be fair, this is not a meaningless exercise.  The point is two-pronged.  When you want to solve a problem, you try the simplest and least invasive solution first.  If a HA would benefit Tate's left ear, then that would make sense.  We want to do what is in his best interest.  Also, I'm sure the insurance company would rather buy a HA than a CI and surgery.  So we thoroughly documented the fact that the HA may help his left ear to detect a few more sounds than when unaided, but none of those sounds are "usable".  He couldn't recognize a single Ling sound or simple word.

Interestingly, though, before she did the testing the third time (after wearing the HA for an hour) she asked him if he thought the HA was helping or was it distracting him.  He said it had bugged him at first but now the sounds were blending with what he heard in his right (aided) ear.  She liked that.  He has an adaptable brain :D

By then it was time to meet with the surgeon, who - oh my goodness - looks so young!  But had a wonderfully calm, confident, competent manner, and we liked him right away.  He reviewed Tate's medical history, asked him several questions, and fielded questions from all three of us.  I was glad that Tate had questions of his own this time.  He's such a go-with-the-flow guy that I want to make sure he is invested.  And I truly think he is.  He had been looking at the literature and saw that one of the three companies claimed that their electrodes are longer, and he wondered if that meant he'd hear better with that kind.  Turns out, there's no data to support that, but excellent question.  All the docs (and parents) we've talked with say about the same thing - that all three CI's work wonderfully.  They just have different bells and whistles.

So...  Sounds like the CI team meets every other Thursday, but one of the docs will miss this week's so they'll likely not discuss Tate for another two weeks.

Fine.  No problem.  We want to keep the momentum we've got, but there's no urgent rush.  I did ask him what kind of time frame we'd be looking at if they approve Tate and he said about a month and a half, which would probably mean April.  Or maybe May.


You know, it's kind of funny.  I have to admit that I'm guilty, at times, of idealizing how much simpler and more peaceful life was in "olden days".  But you know what?  Give me technology any day!  I'm so thankful we live in these modern times!

Yes, we're still taking it all in, but thankful for answered prayer already. 

*  They seem to all be talking about implanting his left ear, so I don't think that will be an issue.

*  Though he hasn't been aided in his left ear for five and a half years, he's still hearing some sound in that ear, so the nerves haven't completely given up.

*  I've felt a peace and confidence with all the doctors we've met with.  No weird vibes, or wishing we'd drawn someone else.

*  We'll keep talking about it, but Tate is mature enough to understand the decision before him, because it really is his decision.  On the one hand, we're the adults and it's not fair to "pass the buck" completely onto him with a decision of this magnitude.  But he's old enough to take it in and have his say.

We so appreciate all your prayers and encouragement!


Denise Portis said...

I had my worse (most deaf) ear implanted. Like Tate, I had "some" residual hearing in that the audial nerve was working still... but even with a hearing aid received little benefit and zero speech recognition.

I still wear a hearing aid in my right ear which seems to improve my audiograms about 10%. What leaves me speechless (no small task THAT), is that I test at about 95% with the cochlear implant now. I haven't heard this well since... well since before I began my own downward spiral into deafness.

I'm so tickled at the way things are going. The young do really well because their brains ARE still highly adaptable. And Tate works hard. His hearing history and language development show that.

I have the Cochlear America's brand - the Nucleus Freedom - although I think they are on the Nucleus 5 now. I know many with the Advanced Bionics that do well too though. Not so much with the Med-El. (I use to travel and speak for the Hearing Loss Association of America so have met a HOST of recipients). I love Cochlear but don't push it on folks as my buddies who have AB love theirs too. I know Cochlear does more CI's than any other company and I think that is b/c of reputation and product.

Regardless, I know you must be anxious/excited. I have only had mine 6 years now so still remember it all so well!

A fire hydrant huh? Love the analogy!


Kat said...

I'm so excited for you guys! I'll keep praying for you all during this process.

Ann said...

Wow - I'm in tears of excitement for Tate and for all of you. And your analogy sounds so perfect - so much to process! I am praying for all of you and can't wait to hear where God takes this next!

dlefler said...

Wow - so much to consider and to go through. It is definitely a process! I am impressed with Tate's question - he has really read all the technical specifications on the different brands. Smart kid you have there!

I once read a book about a man who got a cochlear implant and he described hearing for the first time. The book was called Rebuilt, and the author was Michael Chorost. There are some scenes in the book not suitable for children, but it was really interesting to read about his first experiences with the CI as an adult.

I am saying many prayers for you guys!!

Rebecca D said...

Wow... This is all so exciting! I will continue to keep you guys in prayer.

The dB family said...

Fascinating! I will be praying that all goes well and according to God's plan.