Why a hearing aid and a CI?

I've been asked a few times why we're getting Lucas a hearing aid for his unimplanted ear. Today I got the hearing aid evaluation summary from CHOP, with a perfect explanation, so I thought I would share...

His left ear is not currently a candidate for sequential bilateral cochlear implantation due to surgical concerns. While a left ear hearing aid is not expected to match the benefit Lucas receives from his CI, current research demonstrates children with CIs can benefit from amplification in their contralateral ear. Benefits include potential for improved localization abilities, access to natural sound, greater ease of listening, improved performance in background noise, better music appreciation, as well as stimulation of his left auditory pathway.

Wow... SOOO well said. Love it.

When I think of bimodal kiddos, three very successful ones come to mind right away: Christian, Ben and Alexander.

I would still rather Lucas become bilateral instead of bimodal, but if he receives even one of the benefits above, it will be worth 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!

100th post

Wow! 100 posts!

Yesterday we drove to the CHOP CI picnic. So fun! There were so many CI kids running around. Unbelievable! All 3 companies were represented, with goodies from all. I finally got to meet Morgan and her Mommy and Jim from CiCircle. Altogether, it was just a great day. We've had quite an awesome month of meeting other CI kids. I'm so thankful to have had that opportunity!

Now, to finish up our rounds, we just have to head up to New York state to meet Nolan and Ben, up to Toronto to meet Ava, then over to Wisconsin to meet Peas and AJ, down to St. Louis to meet Danny, and way over to Northern California to meet little m and Landry. Oh yeah, and on our way back, we'll stop in Texas, to meet Baby K, Alabama to meet Gage and Brook, and Georgia to meet Shiloh. Is anyone up for another road trip? Is there anywhere else we should stop? :)

Tomorrow we head to the local audiologist about the hearing aid. I hope that goes well.

9 months from now...

And no, I'm not pregnant! But, today's cardiology appointment went so well that we don't have to return for another 9 months. Yay!

We start each appointment with a heart echo. The last 3 times, Lucas has laid there nicely, while the technician does an ultrasound of his heart. Not today. Thankfully, she was still able to get the readings that she needed, but he was not a happy boy. From another room, you might have thought she was cutting open his heart, but really, she was just rubbing ultrasound jelly on his chest. It's such a tough age, because he's old enough to have fear, but not old to understand what's going on, even with an explanation. Hopefully it will go better next time.

Anyway, his heart is really the same, which is great news. The size of the left ventricle has not increased anymore, and since Lucas has grown, the proportions are just barely above the normal range. The doctor didn't even bother to get out a new heart diagram and draw what Lucas's heart looks like compared to a normal heart, because it's the same as last time.

We were done in under an hour, which is record time. And we don't go back until April. Can't beat that.

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.

the week of appointments

Today was Lucas's 18 month well baby visit (at 19 months). Because of his CI surgery, his 12 months immunizations were pushed back a month, also pushing back his 18 month immunizations. So, it was a pretty easy appointment. For once, I didn't have a long list of questions for our pediatrician. It felt kind of nice. Lucas is in the 5% for height and weight, so he's a little guy! But, he continues to gain weight and grow, so we're not worried. And, I think Lucas is done with shots for a little while, woo hoo!

Tomorrow, we head to CHOP. Despite the long drive, it will be an easy day, with just audiology and a speech evaluation. It makes me think back to last year, and all of the days when we had 3, 4 and even 5 appointments in one day. Tomorrow will be nothing like that. I'm actually looking forward to seeing where Lucas tests in the booth. I know that he is hearing more than he tested last time.

But, I'm worried about speech. There, I said it. Lucas is doing wonderfully, but how will he really measure up? In terms of speech, he's doing very little. So, I guess we'll wait and see what she has to say.

But, I decided to make a list of what he IS doing to bring along and share, to especially emphasize his receptive spoken language, since that seems to be his strength right now. At 19 months of age, and 6.5 months post activation...

* Lucas responds to a variety of sounds, from birds chirping to airplanes flying overhead, to dogs barking from afar.

* Lucas makes a variety of sounds, although mostly the same ones he was making at 16 months: mama, dada, baba, nana.

* Lucas will blow kisses, if he is either asked to blow a kiss, or hears a kissing sound.

* Lucas will cover his eyes with his hands if you say “peek-a-boo.”

* Lucas will throw his arms up in the air if you ask him “How big is Lucas? So big!”

* Lucas will identify the following body parts on himself and on a book, and sometimes on other people: eyes, nose, belly button.

* Lucas will gesture along to “the wheels on the bus” with the horn and wipers.

* Lucas will tap the horn on his car when prompted by “beep, beep.”

* Lucas will clap when prompted by "yay!"

* Lucas’s expressive words or approximations: mama, ahhhh – airplane, dada, bye bye, bown – down, hi, muh muh – milk, buhbuh – bubbles, ba – ball, uh – up, ow - meow

* Lucas’s expressive signs: milk, eat, more, light, mommy, cat/kitty/meow, uh-oh, please, cheese, what, bye-bye, dog, all done, hi, down, book, bed, hat, bath, rain, daddy, brush teeth, fish, bird, airplane, hot, ball, monkey, mouse [He will do all of these signs with verbal cues only.]

* Lucas understands and responds to the following spoken words by a show of excitement, pointing, etc., in addition to all of the words that he knows signs for: cracker, water, up, upstairs, downstairs, outside, hungry, point to the…, diaper, animal sounds, car/ride, walk, Oma [This list is not comprehensive.]

Our week of appointments ends on Thursday with a visit to the cardiologist, for his 6 month follow-up visit. Hopefully he will remain on monitor only status, and we will return in another 6 months. Expect some updates.

BTE experiment

Interestingly, all of the families we met this weekend chose Cochlear Corp. for their implant brand. And they all use the babyworn cord option in a variety of processor colors. And all but 2 of the kids were boys between 15 & 19 months. There were lots of little boys running (I mean crawling) around!

Anyway... Lucas has had a pretty nasty diaper rash this week, so I was giving his hiney some nudey time to give the rash some air. Because I had nowhere to attach his babyworn cord, I decided to try out the BTE and see how it worked. I kind of like it! And his ears seem to be sturdy enough. The only thing I don't like, is that when he does pull it off, or it falls off, it's not attached to him anywhere. But, I can get a critter clip too. I also decided it was time to change the mic cover, so we went a little *crazy* (ha!) and chose green, instead of silver.

He also enjoyed being able to wear it with his swimming trunks while we were playing outside at Oma's house. He even went through the sprinkler with it on!

But, we took it off to splash in the pool with his cousin. We were taking no chances!

Part of the secret is wig tape. Landry has been doing this since the beginning! We'll see how long it lasts though. We may be back to the babyworn soon. It works well for us too. I just wanted to try something different!