Victory

A weight has been lifted.  Many of you don't know that I have been battling with our insurance company since the end of 2016 to get more therapy visits covered for Ezra.  As a parent of a medically complex child, we see specialists from practically every rehabilitative sector: physical therapists, occupational therapists, speech therapists, dietitian, audiologist, chiropractor, etc.  I have learned that within every discipline there are therapists who have specific expertise in different areas.  We have been fortunate enough to be connected with therapists who share the same title but have unique and relevant experience to help Ezra.  For example, we see several Speech Pathologists.  One of them is part of Ezra’s Cochlear Implant Team and specializes in therapy for children with hearing loss.  We also see a Speech Pathologist who is part of Ezra’s Cleft Palate Team.  The third Speech Pathologist we see is part of our Feeding Team.  I consider each of these therapies to be distinctly different and vital to Ezra’s progress.  That's what I was trying to communicate to our insurance company.  Our policy provides exceptions for certain "chronic conditions" and my claim was that Ezra's diagnosis should fall under that category.  

This 6+ month conflict was such a slog.  It involved so many hours on the phone, waiting on hold, getting transferred around to different department experts, acquiring letters of support from Ezra's therapists, explaining our unique situation, defending the medical necessity, petitioning to defer payment for services, paying for visits to avoid collections, receiving denial letters, feeling frustrated by contradictions in the health system, advancing to higher levels of appeal...it was a LOAD, and as a non-complainer, one that I held privately.  A few weeks ago, I argued Ezra's case to a panel of doctors.  It is the highest appeal option and that ruling is final.  We won.  I got the call today.  And not only did they retroactively approve his therapy visits for 2016, they are giving him unlimited therapy visits the rest of this year.  They told me his case was the first to successfully appeal under the "chronic conditions" exception and that they would be looking into the policy language with their lawyers to see what modifications could be made so that we would not need to appeal for services in the future. 

I'm going to love not thinking about this anymore.

So much effort.  So much relief.

Go Team Ezra!

Cochlear Implant

One month ago Ezra had Cochlear Implant surgery.  The plan included letting everything heal for a couple weeks and last Monday, we got to turn it on!

Here is sweet E the night before surgery.

After surgery he wore a plastic cup-like device over his ear that was packed with gauze.

There was quite a bit of blood that drained out over several days.

As soon as Ezra woke up, he tried to take off that ear cup so I tired wrapping his whole head up to keep it on....which worked (slightly) better.

This surgery was the first time I saw Ezra have strong opinions about what was happening to him.  He was not happy to have nurses take his blood pressure or listen to his heart beat.  He has always been such an easy going little dude, so it is clear that he has memories associated with previous hospitalizations.  

The really nice thing about this surgery, was that we were home later that day.

Ezra now has a new Hearing Birthday: January 11, 2016.

Any hearing he had before will basically need to be relearned so he's starting out at square one...again.

The part over his ear that looks like a hearing aid is the processor---the part that receives the sound.  The round piece on his head is the coil which attaches to a magnet under his skin.

When the magnets are connected, the processor will transmit auditory information to the internal electronics.  The internal piece inside his cochlea has 22 electrodes that stimulate the auditory nerve.

So far Ezra is tolerating it very well.  He cried during activation and is close to tears when we put it on in the morning, but I can already tell that he is getting more used to it.  By mid-morning, he has no issues and I can turn up the volume.

The audiologist told us that it will take about 4 weeks for him to be able to discern that there are differences to the sound he is hearing.  So instead of just NOISE, there will be noises.

So far, so good!  

Oh, and did you notice that Ezra is standing by himself?  He can stand with the support of a wall, table, sofa, etc.  We are working on the "cruising" concept now.

Ezra, we think you are awesome!

Surgery

Today, Ezra will have the 7th surgery in his young life, a cochlear implant.

As I was silently mourning the loss of his natural hearing--I allowed myself to imagine Ezra never hearing my true voice or his father's or his brother's after this day.   After some tears and deep breaths I thought about what brought us to this decision.  I remembered that 7 months ago Ezra couldn't hear anything.  And that over these last 7 months Ezra has worn a hearing aid all waking hours.  And, although he clearly hears more noise with his hearing aid, it is not enough to imitate speech (which we would have expected by now).  I'm not certain what Ezra does hear, but it is certainly not what I do and now, with the aid of technology, what he will hear is going to be different, but clearer.  We are confident that the path of a cochlear implant will be Ezra's best chance for learning language.  Sometimes I need to allow myself moments of maternal anguish in order to make peace and move forward.  Like the sun setting over one landscape in order to bring light to a new day.

Ezra, we are so optimistic this will enrich your life.  And, even though we have said the words a thousand times, we hope that this surgery will be the beginning of hearing how much we love you.

Hearing Birthday

One thing I came across while researching hearing loss is that everyone remembers and keeps track of their "hearing birthday."  When you have profound hearing loss and finally gain some access to sound, you are starting anew.  Your age doesn't reflect your abilities in hearing and speech.  And so, keeping track of this very important day is a way to measure progress for your adjusted hearing age.

The photo above is from Ezra's actual birthday.  

His birthday wish must have been to hear, because he started responding to sound....on his birthday....one week before his scheduled cochlear implant surgery.  

We could not believe it.

After Ezra was born, he failed his newborn hearing test.  Three times.

This was followed by a sleep Auditory Brainstem Response (ABR).  I kept Ezra awake so he was utterly exhausted at the time of his scheduled appointment, so he would fall asleep.  The problem is, under natural sleep, you can't test kiddos as loudly, or you might wake them up or cause them to twitch or startle which screws up the brain readings.  He registered in the severe to profound hearing loss range.

This test was followed by a sedated ABR.  His hearing loss was confirmed profound in both ears.  He had zero response at the maximum testing volume (90 decibels) of every frequency.

On his birthday, he startled and turned his head when he heard Jesse close the front door.  We thought it was a fluke because he's very sensitive to vibrations and visual cues.  But it was not a fluke.  Ezra continued to be startled by very loud noises.  We reported our observations to the different audiologists....how could this be happening?

I will never forget that, over Memorial Day weekend, I had doctors and audiologists taking time out of their holiday to respond to this news---I think it was just as unexpected and exciting for them as it was for us.

It's possible that Ezra's brain started making new connections.  It's likely that he suffered a 20 decibel loss just from congestion in his ears....and that fluid was drained when he got an ear tube placed in March.  But these things are educated guesses.  Ezra is super unique which makes it nearly impossible to compare his path to what would be typical.

On Wednesday we completed another sedated ABR.

Right ear: profound hearing loss (no response)

Left ear: severe hearing loss (responses between 65 and 75 decibels....depending on the frequency)

The great news is that Ezra's hearing aid is now useful.  We had it reprogrammed and he's been wearing it without any issues.  The audiologist is hopeful that the hearing aid is giving him access to sound as soft as 30-40 decibels.  Here's a chart from a hearing aid company, EarQ, to help understand what those numbers mean.

For now, the cochlear implant surgery is postponed.  We hope to see Ezra make progress over the next few months as he starts realizing that sound exists.  Babies start hearing in the womb as early as 18 weeks, so when most children start talking at around one year of age they have been listening and hearing for over 18 months.  It is amazing how much we take for granted.

I wonder if Ezra's peaceful disposition and ability to sleep through anything will start to evolve with this change.  I will miss this sweet baby, but can't wait to see what will happen.
In a year that has been filled with lots of difficult news, this feels like a victory.

Happy Hearing Birthday Ezra!
Thanks for making this day so easy to remember.