Tuesday, October 25, 2011

Can you hear what I hear?

I'm not sure exactly why I haven't tackled this little bit of news in Riley's world yet but I'll give it a shot tonight. I've had 24 days in October to share but I haven't.    I guess it seems like a big issue.  One that I should give a lot of profound thought to or have a great story to go with.  It really is fairly simple.  Riley is now wearing hearing aids. 

I have gotten a ton of questions about Riley's hearing and if this was a new development or what exactly happened that at almost age 5 he is getting hearing aids.  We have been amazingly blessed with Riley's health.  He simply has not had a multitude of health concerns like so many of our friends. He tends to have really random issues that cause no real issue after they are dealt with.  For example he was born with two fingers stuck together.  They were surgically separated and that was the end of that issue. 

This hearing issue is not new.  We simply have a new Dr. that pushed the issue  with and for us.    Riley has been going to the ENT since  birth almost.  Children with Ds have really small anatomy and are know to have issue with the ears so screening starts immediately.  He had tubes placed at 9 months and as we approach his 5th birthday in a month we are still on the original set of tubes.  About a year ago Riley's ENT, whom we loved, retired.  So we saw a few Dr's in the practise and settled on one that seemed OK.  He is great with Riley and overall a very mellow man. Since it had been a while since Riley had a full hearing screen he ordered one and the results weren't great.  We got the typical story about how small anatomy and tubes can cause these results.  I didn't really think much of it and thinking back on it I think something was mentioned about how we'd monitor things.  Honestly this Dr visit was always a no brainer that didn't require much thought.  Things were good we would get the tubes checked and the gunk removed and be on our happy little way. 

In June we had another hearing test and as the Dr was going over the results from the day he dropped the big "if the hearing tests don't change we may need to consider hearing aids"  bomb in the middle of a very typical update.  I think my jaw hit the ground because this thought simply had never ever ever crossed my mind.  I know Riley can hear.   So we chatted about the results and scheduled a recheck in a month.  This Dr with this one decision to push screenings a little more has made a huge difference.  He didn't accept Riley's huge language delay as simply being part of Down syndrome. 

That month was a long one.  I questioned everyone that I could draw on for a resource.  I grilled our speech therapist and my friend Paula who has a child that has a cochlear implant and a hearing aid.  We did our own tests on Riley and were convinced he could hear just fine.  I googled and googled trying to find anything that talked about low frequency hearing loss.  When were hearing aids really useful?    To be completely honest my panic about hearing aids had very little to do with anything other than the price tag.  I immediately called our insurance company to confirm my fear that we have zero coverage for hearing devices.  Big surprise not many people do.  It just isn't a typical coverage.  So the month came and went and the next appointment arrived. 

It was an off day for Riley to say the least.  The month before he had been amazing during the screening.  He played all the games, answered all the questions and the girls put the thingy mawidigts in his ears.  As I was leaving I received several compliments from the staff on how amazing both of my boys were.  Rex had come with us and was so patient as he waited for Riley to finish everything.  It was a good day.  Now picture the opposite and then multiply it by 1000 and that is how bad Riley was on the follow up screening.  As we were rescheduling yet another followup he ran off from me and I had to chase him down the hall way.  I actually had to follow him into an exam room where the Dr was left open.  I was more than mortified to realize that there was a patient and their family in that exam room.  Granted next time I bet they shut the door it was still not a good moment.  Since these results were not reliable we had the conversation about how long to wait for reliable tests, if a was sedated ABR needed, or really what were the next steps.  We settled on another screening in a few weeks. 

I went back prepared for battle.  Riley was going to behave and we were going to get this done.  Plan B was that I was going to ask to see the hearing aid specialist and see what we could come up with.  I didn't not want a sedated ABR if I could avoid it.  No need to sedate if you can avoid it.  Well that was a waste.  Riley was a total rock star again and I had no need to prepare for battle.  He was flirting with the audiologists, the nurses and even put on a good show for the Dr.  He had to show the Dr how to solve the puzzle on my IPhone.  The tests very deemed very reliable and so we had our results that showed a high moderate hearing loss in the left ear and a mild hearing loss in the right. 

asked them to give us feedback as he progressed.  We weren't so sure that this very expensive experiment would do anything at all but we were going to give it a try.  So we did the molds and went back to get the hearing aids and learn how to take care of them and help Riley get used to them.  We put them in that Friday morning and haven't looked back.  Riley immediately had facial expressions that told us he could hear things he wasn't used to hearing.  The follow morning while we were outside at a soccer game he hear a train in the distance.  He got a funny look on his face and said Train?  He knows the sound of a train but in the distance I don't think he had hear that distant sound before.  Immediately people started telling us that they could tell a difference in the clarity of his speech.  I was glad to hear other people notice it and make sure it wasn't just Justin and I hoping to hear something. 

Experiment done.  Hearing aids are staying.  Riley has been amazing with them since that first day.  He leaves them alone for the most part. He has discovered that if he jumps up and down really hard he can make them come off.  That isn't common behavior thankfully.  The aids came with little decals of ton of different designs.  Riley choose the giraffes for his.  If you ask him to show his giraffes to someone he turns his head to show his aids like he is a girl showing off the new diamonds hubby just bought her.  It is pretty cute. 

This morning he brought me the case that we keep them in and asked me to put them in.  There is no reason he would do that unless they make a difference for him in his world.  I feel bad that we didn't pursue this earlier but Justin and I are pushing this parental guilt to the side.  We made the best decisions we could with the information we had. 

I took pictures and a little video when we first got the hearing aids and had plans to post them but my photo card is giving me fits.  I will update with video as I get it to work. 

No comments:

Post a Comment

Thank you for leaving a comment. I love to hear from those that stop by. If you don't have a blogger account just choose Anonymous - but don't forget to leave your name in the text of your comment.