Wednesday, July 26, 2017

sparkly hearing aids

The pink sparkly hearing aids are in!

Madeleine is drawn to jewelry, so the good news is, I think she thinks they're jewelry, so she hasn't been messing with them. Win.

But the reality...

Madeleine has a profound hearing loss.  Normal hearing is measured from 0-25 decibels. M cannot hear sounds above 80 decibels, putting her at a profound loss. Not to pop anyone's bubble, but these hearing aids don't help her much (on the surface).

Why go to the trouble of getting hearing aids?

1 - It's required by insurance. We have to prove to insurance that even though her sedated hearing exam shows she has a profound hearing loss, that hearing aids won't help.

2 - Even though the hearing aids may not help her distinguish sounds, the hearing aids may help stimulate her nerves and essentially help her body get used to the idea of sounds, if that makes sense.

3 - If she medically qualifies for cochlear implants, this is good practice for putting something on or in her head and learning not to mess with it!

So what are our next steps?

1 - M's hearing aid trial is fast tracked due to her age and circumstances.  While we know she's a smart little girl, she needs a full language - whether that's verbal or through sign language - to really thrive.  So we will go back to the audiologist in one month to see how she's doing with the hearing aids.  We'll most likely report back that we haven't noticed any changes.  Or maybe we will.  Who knows.  And then we go back two more times to see to check that little box for insurance.

2 - In theory we know that she qualifies for cochlear implants, however we don't yet know if she medically qualifies.  We don't know too much about her history before she became ours, and we don't know what the inside of her ear looks like and how it functions.  Typically at some point during this hearing aid trial, we would get an MRI scheduled, however I'm going to push to do that sooner rather than later.  The only reason to get the hearing aids is to get the cochlear implants.  If she doesn't qualify for the cochlear implants, then there's no need to mess with hearing aids for the next few months -- and we can move on with her education in a different direction.

3 - We have to switch up her language therapy.  It's unfortunately been a good lesson in government.  (I'll spare you the reasons why I believe in limited government.....#libertarian.)

4 - We continue to learn sign language.  Madeleine has mastered the following:
  • No
  • All done
  • More
  • Food
  • Drink
  • Cheese
  • Cookie
  • Bed
  • Good job
  • Please
  • Thank You
  • Bird
  • Penguin
We've taught her so many more, but she doesn't use them consistently enough to really say she's "mastered" the words.

Plus it's kind of difficult teaching your child sign language when you don't know it that well yourself.  Here's how this goes:  While we're playing, I try to pull out her Little People animals to teach her what they are.  I pull up my app to play the video.  If the app doesn't have it, then I have to google it.  Then I play the video about three times to master it myself.  Maybe another three times, if it's complicated or if it's a word you have to spell out.  And then turns out she's a toddler with a super short attention span, and she's already moved on to playing with blocks.


So. Many. Words.

Apologies for the long update.  Hope you all made it through, and hope this explained some of what's going on. Thanks for the continued encouragement and prayers!

Saturday, July 1, 2017

hearing loss update

Many of you have had questions about Madeleine's hearing loss diagnosis, so here's an update:

As many of you know, we've suspected all along that Madeleine had some sort of a hearing loss.  We didn't think it was profound.  Obviously there were signs she didn't have hearing, but there were signs that indicated she did:  how well she follows directions for a 2 year old, the sounds her speech therapist tracked, that she picked up a play phone once and said hello.

We've basically been playing insurance and doctor games for the past six months.  Her international adoption doctor said to give her 2-3 months to talk and if she didn't, then to start testing, which brought us up to February.  Her first tests were inconclusive.  We then got a sedated ABR test scheduled a few weeks later, only to find out her pediatrician/audiologist didn't follow insurance protocol and if we wanted our insurance to pick up the cost of the sedated test (anesthesiologist + nurse + audiologist + bed for an hour or so), we'd have to go to a pediatric ENT first.  We were less than impressed with the pediatric ENT, who spent about 2 seconds with us before having the same hearing tests re-performed, which were also inconclusive.  So finally, four months later, we got everyone's blessing to get the sedated ABR test done.  The sedated ABR test was performed early June, of which we found out she had no response to any sound, meaning M is completely deaf.

We're left with 2 options:  cochlear implants and/or don't explore anything else medically and teach her ASL.

We've decided to explore cochlear implants, but of course, there's an insurance protocol we have to follow before getting to that point.  First, even though her sedated ABR shows she has no hearing, insurance still requires we do a hearing aid trial for 3 months to prove again that she can't hear.

Here's the kicker: Insurance wants us to prove to them that she can't hear through using hearing aids, which aren't going to do much of anything for Madeleine, but of course, insurance doesn't even cover hearing aids!

This week, we took M in to get hearing aid molds (the piece that sits in her ear) made.  Kids' hearing aids are typically in two pieces.  We ended up paying for the molds out of pocket and thankfully, we're able to borrow from the Lions Club Bank for the processor piece (what is typically $6,000+ out of pocket).  Those take one month to make, so we'll go back in a month, get her fitted, and then bring her back in a month and repeat, I guess, until we've proven to insurance again that she can't hear.

(Side note:  For those of you who are familiar with this world more than we are, we're aware that First Steps and maybe even some other organizations could have helped us with the cost of the ear molds, but as we're trying to fast track Madeleine, we wanted to go ahead and get those done ASAP and keep the ball rolling versus waiting even longer.  If we have to go that route in the future, we'll definitely go back to those other groups for the financial help.)

THEN once that's finally been determined, we can start exploring cochlear implants (which thankfully our insurance DOES cover).  In theory, Madeleine qualifies.  In reality, we don't know what her inner ear actually looks like.  The best news we can pray for is that she was born deaf.  If that's the case, then we're probably going to be good to go.  If she wasn't born deaf, but had untreated ear infections or other problems in country and subsequently lost her hearing that way, she may not medically be a candidate for cochlear implants.

And on top of that, we're back at teaching her sign language (rather, learning it ourselves), so that's been helpful too.

That's all we know for now!