bimodal baby

On Thursday I got a call that Lucas's earmolds were in, and they had a cancellation yesterday, so our baby is officially bimodal, sooner than anticipated. There haven't been any 'aha' moments yet, but I guess he needs time to "learn to listen" with this ear again. It will be interesting to see how he tests in the booth when we head back to CHOP in October.

He wasn't so sure about everything at the audiologist this morning. He kept wanting down off my lap, then he'd toddle over to the door and cry a very pouty cry. He just doesn't seem to like this audiologist. Oh well, we won't have to see her very much.

The HA matches the CI pretty well, although it's much smaller. We're also trying a skeleton earmold with Lucas's CI. It will help keep it on his ear much better. That is, if he leaves it in his ear. So far, he doesn't seem to like it OR the hearing aid. *SIGH*

the skeleton mold for his right ear

the earmold with his HA for the left ear

he's constantly touching it both devices, side-by-side

nope, not gonna wear it...

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!

6 months post activation evaluations

Today was a pretty easy day, thankfully, except for the crazy mother who threatened to punch her child in the face and throw her shoe at him, if he didn't behave while she was scheduling another appointment. Oh my!

Lucas tested well in the booth today, responding to speech at 20-25 dB. Our audiologist tweaked his program a little bit, but mostly left it as it is. Unfortunately, he had to turn off 2 of Lucas's 22 electrodes, because they were misfiring. I'm very disappointed to hear that. However, with them turned off, he can probably hear better now, than with the electrodes misfiring. Our audi didn't seem concerned, although I was. He said sometimes they come back, so we'll wait and see.

We are officially getting a hearing aid for Lucas's left ear. Because CHOP is not a durable medical goods provider, they can't order and process a hearing aid for him, so we will be doing that closer to home. We will probably go with Phonak's Naida, a very high powered digital hearing aid. Although it will not give Lucas access to spoken language, it may help him with localization, and loud sounds. Again, I would rather be getting him a 2nd implant, but since that's not an option right now, we're doing the next best thing.

Phew. Lucas did pretty well in speech. And she appreciated my list, so I'm glad I made it to bring along. He was a little antsy, and didn't sit the whole time for her, but I guess that happens sometimes. We got some new ideas from her, so that's good! Instead of asking Lucas to "knock, knock, knock" to open a box, she suggested we mix it up, and have him outline a circle with his finger as we say "open." She also suggested a book from Cochlear called Speech Sounds, for more ideas. I'm always looking for new ideas!

She agrees that Lucas is progressing well. She reiterated that he needs to understand spoken language before he produces it. And, he's making strides with that every day. By this time, they're looking for about 10 spoken words or approximations, and he has 11. So, she really wants and expects him to make more progress in the next 3-6 months. The pressure's on.

Hearing Aid "Magic"

I hope you enjoy this video of Lucas as much as I do. It really puts a smile on my face every morning when I put his hearing aids in. Sometimes he vocalizes more, but I was just happy that he was performing for the camera! Enjoy!