Last week we made a super fast trip to LA. Lance had to make a court appearance on a Monday morning so we headed out Sunday. Our downtown hotel room looked out over a courtyard that was decorated really pretty for the holidays that we enjoyed exploring.
We got to tag along with Lance on this adventure because we had the opportunity to have an appointment at the
John Tracy Clinic for Rori. This is the place that I have been taking a class from with other people here in Vegas. It is an AMAZING place so it was super cool to get to see it in person. JTC is the leading diagnostic and oral education center for young children with hearing loss.
We were super lucky that they were willing and able to get us in. We spent the first 1 1/2 hours meeting with the lady who teaches my class via sattelite. It was great to have her meet with Rori and the rest of us and really give us hands on advice and observation of Rori. None of it is brain science, but we are learning how to really think about ways we can expose Rori to language in everything that we do. Things like - it is easier for Rori to hear a high frequency sound in a word if we are close to her and whisper it. Your natural instict is to say it louder, but softer actually helps those sounds stand out more. Anyway, things like that...
The last 3 hours or so we had the opportunity to have Rori's hearing tested by the incredible audiologist at the John Tracy Clinic. This was such a huge blessing that they were willing to fit us in. They tested Rori without her hearing aids, with her hearing aids, and generally checked her hearing aids. There were 2 people working with her at a time and it was a well oiled machine. They worked quickly but super efficiently and had lots of games to keep Rori perfectly on task. Rori was a superstar and I was so pleased because I knew that that meant they were really getting accurate results.
We learned a ton from those results. Most significantly:
1) Rori's hearing at the low frequencies is at a fairly normal level. That means she hears most things pretty well which is great. Her hearing at the high frequecies is where the issue is and that cause the clarity issues on lots of words as she is trying to pronounce them. We knew that the high frequecies were the issue going in, but what we learned at this test was precisely where the issues are. The loss of those sounds is more of a severe to profound loss which is more than we had been told previously. What that means is she has been doing pretty awesome compensating.
2)Especially since.....Rori's hearing aids hadn't previously been set at a level that was really doing much of anything for her. We had sort of suspected this, but it still was super annoying to have this confirmed. Big thanks to the school district audiologist for screwing that up royaly. I wonder how many other kids she's been so wrong on that don't have parents able to seek out other resources. So basically the hearing aids were making those low frequency sounds a bit louder for her (the ones she hears well to start with), and not doing anything for the high frequency sounds that she needs the help with. Awesome, huh?
So the good news from that bad news is Rori has really taken off over the last few months with her speech. Now we clearly know that this doesn't have much to do with the hearing aids, but is likely more due to school, getting older, and us gaining knowledge about things. So, that makes me even more excited for her to have her hearing aids actually doing something to see what that does for her.
Unfortunatley, the John Tracy Clinic couldn't re-set her brand of hearing aids that day, but they sent us back to Vegas with the test results so someone here could. 2 days later I got her in to someone and he reset them. A few things were off at that appointment though and I left feeling a little uneasy. Fast forward to the weekend and Rori keeps complaining about the hearing aids which normally she doesn't do at all. We're not sure if it is just because they've changed the settings, or??? F
Finally, I call another local audiologist that some kids in her school class go to and they thankfully agree to get Rori in today. Keep in mind that this is the 4th audiologist and that isn't counting ENT's etc. End conclusion of today was the 1st guy last week didn't do it correclty. The lady today adjusted them and then gave Rori a mini test with them on and then adjusted them a bit more. So the rest of today she's seemed ok with them. We'll be keeping a close eye on her and seeing if they seem ok. I'll be curious to see what her teacher thinks after the break.
So the lessons learned from all of this are:
1) Listen to your parent instinct.
2) Be determined and thurough even when others might start to think that you are neurotic
3) Come to grips with the fact that with all the technology that we have in this world today that hearing evaluation and hearing aid setting are so archaic.
The journey continues...it has already been long and twisted...undoubtedly there is much ahead...sometimes it is horribly frustrating...and sometimes it is encouraging and inspiring...but it is leading us to new amazing people and experiences and growth...and today we know more...and knowledge is power that feels good and strong...and now we finally feel like we are getting somewhere and that is such a relief.
*Here is a cool
article about a JTC alum.
