Faith's Hearing Loss Update

Faith's progress with her "special ear" has been tremendous.  Like, our team's most consistent response to Faith is how unique she is.  They did not expect her growth to be as good as it has, although I'm quite certain they are well beyond pleased, there does reside a bit of 'shock'.

While her progress has been amazing, the conflict with her right and left ear still baffle us.  All of us involved with her hearing loss.  Research is conflicting on how to 'treat' auditory neuropathy.

A couple weeks ago Faith had an appointment with the cochlear implant {CI} specialist at Children's Hospital.  The plan was to test Faith's non-implanted ear, her left ear, which would help the team to determine what the appropriate next steps would be to help Faith hear and speak language more accurately.
Faith misses a lot of accurate language.  Typically she will say the last 2-3 words clearly enough that we are able to piece together what she needs, but in her conversation, it is very broken.

At our last appointment they asked us to have Faith wear her hearing aid {HA} in her left ear for a few weeks, then come back so they could test for accuracy with her left ear and HA.

Our doctor, Dr. N, was very impressed with Faith's results.  She passed her spondee board, the nu-chips and repeated spoken sentences with an average of 60% accuracy between the 3.  She did do so good, but the tests also consisted of Faith to identify sounds, which she does excellent at.  And always has. 

She also has memorized most of the tests they perform.  Which doesn't mean much in relation to AN but it does mean a lot in relation to paperwork/medical insurance/physicians and moving forward.
These tests, in my opinion, are not worth much related to Faith.  Testing is critical and a huge help for determining hearing loss, and how to help improve it.  But Auditory Neuropathy just washes all that away.

Our appointment lasted a long time.  I spent over an hour just talking to Dr. N about what the next steps are and how we can help Faith.  The problem is, Faith passes the tests ifyouwill to be eligible for a CI in her left ear.  Because the tests show she is identifying sounds so well with her HA than it's hard to rationalize a cochlear implant.  However, these tests cannot factor in AN.  And therefore cannot test her speech intelligibility.

Which essentially means, she doesn't qualify {insurance purposes} for a CI because the HA provides the right amount of sound to her.  There are no tests to prove AN and counter the ABR tests therefore ruling out AN distorts her speech within paperwork.

Let me start by exclaiming that Auditory Neuropathy {AN} sucks!

Our team decided they want to wait 1 year before moving forward in any way.  They asked us to continue the use of her hearing aid in her left ear, along with the use of her CI in her right ear, and they will retest in 1 year.

In the mean time our speech therapists are working overtime to make sense of Faith.  No one really knows what to do to help her, or help us, other than to keep documenting.  So that is where we are now.  Documenting everything.

Our team is also talking with their colleagues on the east coast.  They have compiled all of Faith, on paper, and seeking their advice on how to help her.

To be honest, neither Lance or I feel confident or led to get Faith a second CI right now.  Not to say we don't feel led, rather, we both feel pretty content at this time.  We know God will begin to move us forward as He sees, if He does, or not.  And we both have complete peace in that. 
We both also have a bit of reservation with a second CI.  She would not have access to ANY environmental sounds.  What about when she gets older: and gets married, or has a baby, will she hear her baby cry at night?  These are all things we think about....
 
We have faith that though we don't know how to help her, we are trusting in Him to guide us how to.  Faith that is bigger than anything I can put into words.  This is an exhausting road to travel.  And I say that with the most love and honest feelings I have.  I adore my girls...but helping a child to hear and communicate, which comes natural to most babies, is completely overwhelming.  Then add a condition that distorts what she hears and speaks makes the road a little bumpier. 

These past few weeks have been a time of resting in Jesus.  Allowing Him to perfect what my flesh lacks and build me to be more in Him.  My faith has been weak at times.  I've been frustrated and broken, but HIS faith, being so much greater than mine, brings me to Him - and out of myself.