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Wednesday, March 27, 2013


Sometimes things happen in life and you just think, really?  Did we need that?

And then, if you're lucky and/or you work at it, you think,  wow, we can totally handle that.  We are so fortunate that this is what we are dealing with when there are so many other, much, much more difficult and terrifying things to deal with. 

At Maya's well child visit last fall, I asked our pediatrician if she could test Maya's hearing. I had some concerns that I had mostly dismissed as Maya just being Maya but figured it wouldn't hurt to check.  She didn't seem to hear me all the time.  Really, what parents would say they feel heard by their children?  How many parents all over the world at this very second are asking for the fifth time for their children to brush their teeth, put their clothes in the hamper or pick up their toys?  Maya would say, "What??" many times a day, especially in the car when we were back to and there was any sort of other noise. She always cranked the volume on everything and when we would lower it she would say, "But I can't hear it." 

Maya is also loud. Often very loud.  Sometimes it feels like she is shouting at us.  But she is also a rambunctious child with lots of energy.  We had both noted that when we are one on one with her she is a more quiet, introspective child but as soon as you add people (even just one person) and any amount of noise (conversation especially) she would ratchet up her volume to an intolerable level.  Taking her to a restaurant became unbearable.  We always just thought this was her.  Initially we wondered if she just wanted the focus on her or, later we began to wonder if she became overstimulated and made lots of noise as a way to destimulate herself.

They tested Maya's hearing at the office.  She didn't pass.  They referred us to see an audiologist.  The referral never went through.  Another month passed.  I called about it.  Finally we got an appointment for January.  Maya thought the idea of throwing balls into the left or the right basket depending on which ear she heard the noise was fun.  For about 5 minutes.  Then she wanted the ear phones off, the balls to go where she saw fit and to go home.  The audiologist said that she didn't pass the test, possibly indicating a hearing loss, but that her answers were inconsistent so she needed to come back.

Sandi and I both took her to her repeat test in February.  This time she got to press a button on an M&M dispenser when she heard a sound.  She heard 51 sounds and got 51 M&Ms (which she arranged by color and then wrapped up in a tissue to take to her sister and cousins who were visiting).  But 51 sounds were not enough sounds.

The quietest sound an adult needs to hear at is 20 decibels.  For kids the cut-off is 15. The lowest sound Maya can hear is 30 decibels.  The test showed that she has a mild hearing loss and needs hearing aids. 

We took the news as best we could, considering Maya was right there with us.  One of the tests pinpointed where that her loss is sensorineural, meaning it is based in her auditory nerve. We don't know if it is congenital or if there was damage to it somewhere in her young life.  This means the loss is permanent and not due to fluid and cannot be corrected surgically. 

She will need to wear hearing aids for the rest of her life. 

If you're wondering if this feels like a punch in the gut, it does.  But after I let the tears fall over the loss of the idea of my perfect child, I was overcome with gratitude that I wasn't leaving the office of a pediatric oncologist or some other specialist who diagnoses terrifying diseases.  We didn't find out that our child is autistic, mentally retarded, deaf, blind, has cystic fibrosis or needs a heart transplant.  We didn't even get the challenging but liveable diagnosis of a peanut allergy. 

Yes, I've had to grieve.  And each and every time I allow myself to, I also shift my perspective back to how very fortunate we are.

The uneasy part for us is that there is some history of hearing loss in Sandi's family.  We don't know if this means there is a hereditary component, a genetic vulnerability or if this is just a fluke.  Maya's hearing loss is mild, at present, but we worry it could potentially be progressive.

About 5 minutes after we told Sandi's mom about the hearing test, she was online doing some research of the retail variety.  She called us up to say that she would be happy to get Maya's American Girl doll hearing aids.

So Maya and I tucked her doll, Kaylee, snuggly into a carboard box to send to the American Girl doll hospital.  Maya was very concernced about Kaylee being naked as required so we made her a tissue paper hospital gown and taped her up.  Ten days later, and way ahead of schedule, Kaylee returned.

I will admit that at first I thought the whole American Girl thing was a total racket.  I mean we have a perpetually injured, wheelchair-bound doll that lives in our house and tells everyone what to do.  Now I am singing a song of gratitude.  Did you know they even sell dolls that are bald for kids who are going through chemo?

The next step for us is a medical clearacne appointment with an ENT in 2 weeks and ear molds for Maya.   I think we will be up and running in about a month.  Maya has already picked out the color she wants (purple) of the pediatric hearing aid we will get.  She is excited that they come with stickers so you can decorate them and a storage case. Maya is all about storage options.

We've been reading books about kids with hearing aids and teaching her about how this is just like kids who need glasses so they can see better.  Being Maya, she is taking it all in stride and likes the idea of "little computers" for her ears.

Kaylee can hear better and soon so will Maya.  We are all looking forward to (perhaps) a little bit less volume in our house and hopefully less frustration for everyone. 

We are fairly sure that Maya will tell us all to quiet down once she has her hearing aids.  Also, when we have to repeat ourselves it won't be because Maya isn't wearing her hearing aids but that she has turned them off.

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