Monday, September 16, 2013

To Aid or Not to Aid?

That has been the question Brian's entire life.  We have had a variance of opinions on the matter since he was born.  It's been...well to say frustrating would be the understatement of the century.

So here is where are today.  We are doing a hearing aid trial.  We've come to the conclusion that we will never know if it would have helped him if we don't try.

We've been telling people little by little that this is the decision we have made and have gotten mixed reviews as expected.  The most frequently asked question has been, why or why now?  I understand that people will think there has been some sort of defining moment that struck us and steered us in this direction and that's honestly not the case.

He seems to be doing well in Kindergarten.  His speech continues to progress.  Are there holes in his speech?  For sure.  Do we think it could be better with hearing aids?  Probably.  We hope so.  With or without hearing aids, we want his speech to be the best it can possibly be.  So why not try them and see if they help?

We have also been asked if the aids are effective if we will wish we had tried them sooner.  Of course, we will to some extent, but honestly, we had reasons, good reasons, to wait.  We wanted to see how far  we could go with speech therapy.  We wanted Brian to learn to work hard for things.  We needed to see what kind of a kid he was going to be.  Luckily, he's a pretty confident kid.  He is comfortable with himself and we believe he will wear his hearing aids proudly.  Also, there will be plenty of instances in which he won't be able to be aided.  The pool, the beach, bath time...all examples of instances where hearing aids can't be used.  It will be nice to know his capabilities in these instances so that he won't be able to pull the whole, "what?  I can't hear you...I don't have my hearing aids in."  :)  And finally, Brian had some MAJOR sensory issues.  He needed to work through those with the help of his OT before we could even consider adding something so foreign to his ears on a daily basis.  We are lucky and he has been very successful in learning to manage his sensory issues, so now we are at a point where we feel he can handle adding hearing aids. 

Brian is excited about the hearing aids.  Every five year old boy needs a super power and we've told him that this will be his.  He'll be getting "super hero ears." Well one for now...they trial with one, and two in the future most likely.

We went on Friday for the hearing aid evaluation and came home with the trial hearing aid.  It's smaller than we anticipated.  Because his loss is mild, the aid is smaller.  It makes sense, but for some reason we didn't realize this would be the case.  His trial set up is a black hearing aid that goes behind his ear and is connected by a tube to the green ear mold that goes in his ear.  We had a mold made about 2 years ago when he was out for a tube surgery and ABR.  This was supposed to be used with his FM system at school, but the county didn't purchase the system we expected and it wasn't necessary.  The mold still fits well enough to use it for the trial, so that's what we're doing.

In the weeks leading up to the appointment we did a lot of talking about the hearing aids.  We read a book about an elephant that gets them and Brian was very worried by the picture of the elephant getting fitting for the ear molds.  They use a syringe filled with goo to make ear impressions and to a 5 year old this looked very much like a shot going in the elephant's ear.  I made sure to share this with his audiologist and Tommy was very thorough with Brian about the process.  He let Brian play with the syringe, squirted the goo in Brian's hand, let him play with it, etc. before ever squirting it into Brian's ear.  Brian was a champ with this and got really excited when we showed him a picture of what it looked like as it was drying is his ear.  It looked like a snail shell and since "Turbo" is popular right now he thought it was just great that a, "snail was coming out of his ear!"  He's so funny!

Once he had the trial aid on he was really cute about it.  He checked it out in the mirror, tested out his own voice with it on, ran around in the hallway to "hear the air."  It was pretty cool to see him so excited.

He's supposed to break the aid in however suits him.  The goal, of course, is to wear it all waking hours (except swimming, bathing, etc.) so we are working up to that.  I think is uncomfortable for him at times, and he asks us to take it out, but today he was a rockstar with it.  He wore it to "make something" at Lowes, horseback riding, and a friend's birthday party...a total of about 6 or 7 hours.  He showed it off to everyone we saw and everyone has been really great and supportive of him.  It was nice that we had the party because now most of his school friends have seen it.  We are debating whether to send it to school on Monday, but I suspect he will insist.  The biggest issue is that this is a loaner, which means we owe quite a bit of money if it's lost or damaged so he has to keep it in!  It's hard to think about sending him somewhere that we can't control this...at least at first.  I'm sure it will get easier.  Once we go to two aids, which I expect we will, we will have to buy them (or the insurance will depending on what they decide to cover) and they will be insured, so we won't have that worry anymore.  He got to pick the colors for his permanent aids by the way and he picked red aids and blue/red swirl molds.  A mom who I found online whose son is aided once told me that she wanted her son to be proud of his aids and not ashamed of them.  We have adopted this mantra as well and therefore allowed him to pick what he wanted.  There will no hiding these babies, but that's great!  Everyone will know he is a superhero.

We appreciate your support and prayers as we delve into this new chapter.  So far it's honestly been a lot easier than we anticipated.  Hoping that will continue.  We'll keep you posted!

Brian showing off his new "super ear."  Er, and the inside of his nose...


1 comment:

Taryn said...

Happy to hear that Brian is doing well with his trial aid. And hugs to you too momma! I know it can be hard to come to terms with our kids needing any kind of special "device" but at least now you will have a definitive answer on whether it is going to be beneficial for him going forward.

FYI - I think we are all finally healthy on our end so lets reschedule that playtime soon!