Monday, July 27, 2009

stirring up some bad memories

Lucas at about this time last year

Today's local audiologist appointment went well. The reason why I'm referring to it as the local audi, is because it's not the same audi that we see for Lucas's regular audiological and CI needs. We travel 80 miles to CHOP to see him. We haven't been back to this local audiologist since we got Lucas's initial diagnosis on that fateful February day.

I felt pretty sick as soon as we entered the parking lot. Luckily, they've hired a new audi to work specifically with kids, so that was something different. But, she took us to the same room where Lucas had his first 2 ABRs. It really made me sick to my stomach to sit in that room.

I took advantage of the situation, and told her about our new support group and listserv, and asked whether she'd be willing to share the information with her pediatric families. She seemed excited about it. I also told her about the brochure we're working on, and she's also willing to provide that to new families.

I thought about it for awhile, then I did it. I told her about the most frustrating part of the whole initial diagnosis process - the fact that we didn't really understand that severe-profound hearing loss meant that he was deaf. I told her that even if it is hard, from her perspective, to share that with parents of newly diagnosed kids, I find it to be important and valuable. Of course, I think it's important for her to choose her words wisely, and be as sensitive as possible, but I feel that after using the term, severe-profound hearing loss, that it's appropriate and necessary to explain that it's the same thing as what's commonly known as being deaf. She told me that they tend not to use the word "deaf" at all, and thanked me for the feedback. It felt good to get it off my chest. And maybe she'll at least think about it next time before she hands over that heavy diagnosis.

On a lighter note, Lucas got fitted for 2 earmolds, and that was it. Easy appointment. We're going to try a skeleton earmold with his CI, to help keep it on his ear. If we don't like it, oh well. We also ordered the Phonak Naida in gray, to match his silver CI. Soon after the appointment, I got a call from Lucas's insurance company, stating that he'd been approved for the hearing aid. That was quick. Now we just wait until the earmolds return, which should be in about 2 weeks. Then, we'll see what kind of reactions we get!


tammy said...

Good for you for being upfront and honest. I think they need this feedback from the people it affects the most - us parents. Like we discussed before, we walked out of our initial appt too thinking there was some "cure" for his "loss", we had no clue our son was deaf, period, the end. Glad to hear the rest was easy and Lucas will be bimodal in a matter of weeks! Yay!

Shelleyrae33 said...

I'm proud of you! I had a situation with an audiologist yesterday about trying to keep the hearing aids on. I spoke up and told her that she might not understand because she doesn't have a deaf child, but it's hard as hell! God gave us voices to teach those who don't understand and it sounds like you used yours! You rock!

Melanie said...

deaf deaf deaf deaf deaf deaf deaf

Good for you, Momma!

Holly said...

My son has the grey phonak nadia's in both ears. He has a moderate/moderate severe loss and they have worked great for him. I wish you luck with the ci/phonak. I think the mom with the blog live laugh love has a ci/phonak mix. I have been pleased so far.