I am sharing our experiences; please seek information from your medical professional.  All thoughts and opinions are my own.

For those of you who may be new to Clementine County, I’ll give you the short recap.  Recently, my daughter endured a tympanoplasty and mastoidectomy to remove a cholesteatoma and reconstruct her ear drum.  Her two first ear bones were damaged and also removed.  There’s more background on her condition.

In addition to this intense 4 1/2 hour surgery, her ENT also performed a myringotomy on her “good ear” to drain fluid.  There’s also information on cholesteatoma recovery.

Non-medical version: They took out a tumor and two bones from her head.  Then they cut a hole in her other ear drum to drain excess fluid.

Obviously, your ear bones are pretty important in the hearing process.  We had been told her hearing in the affected ear would decline (it did).   During previous audiograms, test results showed severe hearing loss in her left ear and mild-moderate loss in the right.  New to the world of hearing loss, I have been taking in as much information as I could find about children with unilateral hearing loss, assistive technology, and what we needed to do to ensure her success.

We’re just about two months out from her first procedure and met once again with her audiologist and ENT.  I’ve got to admit that I have been anxiously awaiting this appointment.  Now that her ears have recovered from the surgery, how much hearing would she have left?  People would ask me if she could hear, and I honestly didn’t know.

I know, I know.  How do you not know whether or not she can hear you?  Well first of all, she’s a kid and kids aren’t notoriously great at listening.    Secondly, her good ear compensates a lot for the other.  She also is a great lip reader so as long as you are looking at her and being purposeful with your speaking, she gets it.  However, she misses a lot of sound coming from behind her.

But at today’s appointment we got some good news!

2-Month Hearing Update

Her hearing shows mild to moderate hearing loss, with an increase of 10-20 decibels!  Her “good ear” still registers at mild hearing loss, but nothing too crazy.  That means she’ll require hearing aids, but that’s been part of the plan all along.  I’m still floored.  Nothing I had read about cholesteatomas showed any improvement in hearing.  For goodness sake, the doctor took out two of three ear bones.

I went in to today’s appointment anxious, listing all the sounds I adore and the things she’d miss out on if she were profoundly deaf.  The sound of waves crashing on the beach, the hum of amplifiers before the band gets started, the trotting of horses along Main Street.  She’ll get them all back.   It’s true that they’ll come with the help of hearing aids after her next surgery, but she’ll get them.  And ladies and gentlemen, that’s worth celebrating.

Thanks for celebrating with us!

My sweet Harper loves glitter and unicorns.  She is a whiz at math and has a tremendous gift in art.  She’s easy to get along with (total middle child), a great snuggler, and a collector of little things.  She’s obsessed with toy videos on YouTube.

Harper also has a cholesteatoma.  Without getting too doctor-y, a cholesteatoma is an abnormal cyst formed from years of chronic ear infections.  The cyst eats away at whatever it touches–in Harper’s case the three delicate bones of the middle ear.  Harper’s cholesteatoma is isolated, thankfully.  Worried mothers in the middle of the night should not consult Google.  There are so many worse cases.

Glasses!

A post shared by Melanie Walsh (@clementinecounty) on Aug 9, 2016 at 6:29pm PDT

For nine months, we’ve been working towards getting Harper a healthy head.  A surgery in November removed the part accessible from her ear canal.  Today, Harper has surgery to remove the remainder of the cyst.

Thinking back to that November surgery, it was when things got a little crazy.  She was supposed to be having tubes put back in.  The ear infections have dramatically decreased.  But her ear drum didn’t fluctuate the way it should.  The thought was too much fluid behind her ear drum had built up and hardened.  It was supposed to be a 15-minute procedure and then her hearing would be normal.  As the ENT called me back to recovery, and started his explanation with “Well…” I knew it wasn’t good.  It’s not cancer, I remember him saying that.  The rest was kind of a blur.  I made him spell “cholesteatoma” so I could write it in the notes on my phone.

As we head into the hospital today, there’s so much still uncertain.  How much bone will need to be removed? Will bone implants be needed?  Will she be able to hear?

The primary goal of the surgery is a healthy head.  The secondary goal is to protect her remaining hearing.  Her hearing diagnosis is in flux.  Previously, my darling little girl had mild-moderate unilateral hearing loss.  More recently, her affected ear registered moderate-severe and her “better ear” at mild-moderate.  Again, not trying to be too doctor-y.  That means she can’t hear conversational level speech from her left ear.  Unless you’re facing her and speaking loudly, she can’t hear you.  Until the cholesteatoma is removed, her audiologist is waiting for fitting her with a hearing aid.  I hate that she’s spent even more time missing out on so much around her.   Her right ear, the “better” ear, will be examined during surgery to investigate the decline in hearing.

Much to her credit, Harper is very good about asking you to repeat yourself if she didn’t hear you.  Of course, she has to know that she missed you saying something.  If you’re behind her, I’ve noticed she doesn’t pick up what you’re saying very well.  She uses lip reading to fill in what she may have missed.

At seven, I marvel at her maturity.  She admits she’s scared and sad.  She knows she can’t hear, and that surgery is the only option to protect her from further damage.  But thankfully, she’s also blissfully unaware of all the things on Google.  The things that weigh on our hearts as we send our darling daughter into a four-hour surgery.

As challenging as this day is for all of us, it’s been a long process.  It’s almost a relief to be able to move past this and figure out what the new normal will be.  One day I’ll sit down and write all my thoughts on the challenges of such a diagnosis as a parent–the heavy heart, the mom guilt, the intense worry.  But for today, I’m starting here.