Anna Joy: the long road keeps getting longer....

The initial reports from Anna's MRI are not encouraging.  She has significant damage to her auditory nerves.  Just by way of education for those of you following along, cranial nerve VIII is responsible for your hearing and your vestibular (balance) system.  Most people with sensorineural hearing loss still have functioning nerves.  These nerves are key factors in the success of a cochlear implant.  If a person is born without these nerves, or if these nerves become so severely damaged that they cannot function at all, then the individual with hearing loss is not a good candidate for cochlear implants.

So far, we know that Anna's nerves are far more damaged than what they prefer to see.  She will now have a CT scan to get additional information, but for now, the answer appears to be that Anna is not a candidate for cochlear implants. This is VERY rare.  The vast majority of deaf children don't have this type of extensive nerve damage.  In fact, we know that our doctor, who has done thousands of implants, told our auditory-verbal therapist that Anna's case is among the worse he has seen.  We are so thankful to God Almighty that, whatever caused such extensive damage to Anna's nerves (most likely culprits: a significant birth defect or a serious case of meningitis), Anna's life was spared, and she emerged a happy, cheerful, funny, resilient little girl.

As for our next steps, right now, we don't know. There are so many paths that are possibilities, but we have to pray and carefully step where we believe we are led.  I don't say that to be trite.  I say that because it's really where we are.  We just don't know.

We have been told of a procedure that they have been doing with some success on children in Europe that has just been FDA approved to begin clinical trials in the US.  We don't know enough about it yet to have an opinion, but we do know it would be far more extensive surgery than a cochlear implant and would not be covered by insurance.

We know of other technologies not ready for trials yet, but that may become ready in the next few years.  Here's the thing:  we are not so desperate to make Anna a hearing child that we want to grasp at straws.  We accept Anna's deafness, and we know, without doubt, that Anna can live a full, rich, meaningful life without any further intervention.  For many years, deaf individuals have grown, learned, graduated from college, married, parented, and done every other thing hearing people have done.

At the same time, we are in this time and this place for a reason.  We don't want to deprive Anna of any opportunities that would make it easier for her to acquire language, perform academically, and forge relationships in a hearing world.  If that means opening ourselves up to new ideas and technology, we can't say "no" just because it's new or just because it's not what other people would choose.

More tests...more decisions...more obstacles...more chances for Anna to shine.  We absolutely believe Anna will shine!  Anyone who has ever met her in person can have NO doubt of that!

If someone were to ask me what my #1 wish/hope/prayer for Anna is in her life, I would say this:  I want Anna to know Jesus and to welcome Him into her heart and to serve Him all her days.  There is no distiction between deaf or hearing in that prayer....and I believe with all my heart that the Lord will hear and answer.

I don't know exactly what the next steps are, but I do believe with all my heart that the Lord has made Anna very special, and that her story will be more than we ever dared to even dream, hope or imagine.
 
Amy