Accesorizing

I recently received an email from Advanced Bionics advertising their new Kinder Clip. This allows a CI user to wear the processor clipped to their shirt, in other words not on the ear. (Cochlear has long had a babyworn option that is similar in that it helps take some weight off the ear.)

This would have been a life saver over Christmas when Marielle was healing from blisters behind her ear and therefore couldn't wear her device at all. I was ready to buy it that second!

Being the impulse shopper I am, I logged on to the webstore to purchase and it wasn't there!! I e-mailed customer service, who told me I could simply e-mail back my credit card number and they would take care of it. Surely nothing has ever gone wrong with people sending credit card numbers via e-mail, right?! She also didn't mention how much it costs!

Unfortunately for them all this back and forth took time, and while I was waiting for answers, talked myself out of it for the time being. I was thinking it would be great for gymnastics class when her processor was always falling off. No more double stick tape! But then we saw our audiologist, he cut the tiniest bit off her ear mold tubing, and now the processor fits perfectly. We never have to tape it on and I haven't seen it fall off yet. Perhaps we'll look into it again when it comes time to try out for the Olympic gymnastics team.

This is a great option for younger kids and I'm glad they came out with it. I just wish if they were going to send a big e-mail blast trying to get me to buy it, they would have made it easier to buy!

You might need to know this for Jeopardy one day.

I do enjoy teaching her things an average 3 year old doesn't know, like identifying all the instruments of the orchestra. A speech therapist mocked me once for this, but looks like it wasn't a total waste of time.



Did you know the word cabasa before today?

I really thought I would make it more than three years before my daughter's knowledge surpassed mine. But alas, she has come home from school knowing more than me. (A drey?? Never heard of it.) I really had hoped that I had at least until 2nd grade before this day came.

Is this why people want to ban cell phones in cars?

I'm working in DC - about 25 miles from home - this week. It's an hour's commute on a good day. Ominous forecasts called for sleet during this morning's commute. Due to my extremely important meeting duties (which apparently range from babysitting the fajita bar to calling for cabs), I decided I couldn't risk not making it in to work. This is a long term gig I don't care to screw up. I also have a shady history driving on ice that has cost me thousands of dollars and raised my insurance premiums.

On a whim I got on Priceline - once I saw regular hotel prices in the area were over $200/night. I submitted a $60 bid, never thinking it would be accepted. Surprise! Once you bid, your credit card is charged and there's no turning back.

After yesterday's meeting, I endured 80 minutes on the Beltway so I could spend an hour with Marielle before her bed time, then turn around and drive back to DC. I was glad I got to see her, even if she was crazy as ever. After I got her in bed I looked outside and saw my front yard already glazed over. This was a definite flaw in my master plan of watching all my Thursday shows and then driving to the hotel. I needed to get on the road before it was too late.

This is what I MacGyvered:

- Set phone at home set on speaker
- Turned TV speaker towards phone, turned up TV
- Called my cell phone from my home phone
- Listened to Grey's Anatomy via cell phone over the speakers in my car

Seemed at the time like a decent plan that might actually work. Instead I got a very interesting glimpse into Marielle's every day life as I strained to make sense of what I was hearing.

- I could understand who was speaking if it was a voice (character) I knew well. If it was an unfamiliar voice there was no hope.
- If it was a familiar speaker I could catch some but not all that was said. I generally got the idea of the scene.
- My ability to hear was impacted by the frequency of the voice. For me, men were easier to understand.
- Competing noises (wipers, car heater, etc) made it very, very hard to make sense of anything.
- Comprehending anything at all took all my brain power (aren't you glad you weren't on the Beltway last night?)

I eventually gave up but thought I pretty much got the main idea, though every episode is the same: someone in a relationship sleeps with someone they shouldn't, a patient is a paid in the ass, someone loses their job, THE END.

Then today at work I sat down and watched the whole episode via internet. (My job is so hard!!) With the visual clues and clear audio signal I realized just how much I really had missed. Not just minor details but entire cancer diagnosis and lung removals.

No matter how much therapy Marielle gets she'll still need accommodations - an FM system to overcome background noise, and captioning or a CLT to fill in the blanks. This revelation came at just the right time as I'm contemplating some big changes. More on that soon...right now I have some TV shows to watch to get back to work.

Are you smarter than a 3 year old?

Bed time has been rougher than normal the past few days due to the paci-fairy's visit last weekend. It takes Marielle much longer to fall asleep, and overnight she learned all the excuses required to get our attention: "I so thirsty!" etc. Barry was home with Mari last night while I was drinking excessively at book club. I think this may have been his first turn at putting her to bed since she learned her new tricks.

His report from the evening:

Marielle is supposed to be sleeping but she is making a lot of noise, I go in to check on her.

Mari: Daddy! I need to go potty! (I bring her into the bathroom to sit on her Elmo potty)

Mari: Daddy, you say BEEBEEBEE (she wants to do some "vocal play")

Me: BEEBEEBEE

Mari: You say... BAHBAHBAH

Me: BAHBAHBAH

(game continues for some time)

Mari: You say let's go play

Me: Let's go play

Mari: OK! (runs for her toys)

I wish.

In the car, on the way to AVT:

"Marielle, we're going to speech."

from the backseat, "HAFTA GET THE SWIMSUIT!!!!"

Mocking is another form of expressing love.

Despite all of her progress, Marielle still has some hilarious mispronunciations. Many are age appropriate while others revolve around the S sound that she only has access to for a month.

Recently she's decided it's funny to insist that she's right. If she hears you say it right and thinks you're trying to correct her, she'll insist "NO, MAMA, IT'S _____"

candy cane: camdy cam
six: sick
pajamas: jajamas
jack-o-lantern: jack-o-leen
Santa Claus: Danta Claw
thank you: thank yoon
Monica: Mama-ca
New York City: New City

The best, though, is her insistence that it's not Happy New Year --  it's Happy New You! One could argue that's just as appropriate of a wish.

2009: proof I'm not always a pessimist

For many people 2009 was a terrible year filled with job loss, savings evaporating and many other things to rightfully complain about. For us, though, it was incredible. For once you won't hear complaints or negativity coming from me. When I look back on the past year, I am simply shocked at where we are today.

Though Marielle was both diagnosed with apraxia and referred to occupational therapy in 2009, in the end we saw some amazing results. She went from a kid who barely spoke in 2 word sentences that no one but mom could understand (and NO words included any sounds requiring her to close her lips) to someone who can have a decent conversation with a stranger. We put 5,000 miles on the car traveling to therapy and missed many hours of work, but it was definitely worth it.

One of my fondest memories of the year was spending July in sunny Los Angeles at the John Tracy Clinic. I think about our time there almost every day, especially on days that we are suffering through 30 degree temperatures and I see it's 80 degrees in LA!  I wish I could go back and change things - like just forgetting about all my job(s) and spending 100% of my time enjoying myself and interacting with the families. Or perhaps NOT getting on the return flight home! But even with the small regrets, it will always be one of my fondest memories.

This year we experienced the miracle of cochlear implant technology. Though 80%+ of audiologists would look at her ABR results and argue that hearing aids should serve her just fine, I knew otherwise. Luckily we met and persuaded the right people and she was implanted in October, activated in November. One month later we had to take a brief vacation and return to her hearing aid. She protested all day, ever day, "NO HEARING AID TODAY! JUST A CI!" She prefers it and that it works for her. A month after activation, she is understanding everything and everyone - results we didn't expect to see for a year. She hears such quiet sounds now, and is living proof that more professionals should trust moms!


I'm not sure it's possible for her to keep up the astonishing rate of progression we experienced in 2009, but Marielle has proven many of us wrong before and I look forward to it happening again. I'll try to get some video of her tomorrow reading the same book she read a year ago.  Until then, watch what can happen in 3 short months.

May 23 - At 28 months of age, we finally get the B sound
July 29 - Mari learns to have a conversation and answer questions
August 25 - Mari sings an entire song on command

I still don't know what the magic bullet was. I just tried everything (OT, chiropractic, fish oil supplements, more speech therapy than ever, a 3 week trip to JTC) and hoped something would stick. Clearly it did.

1 month

As of Christmas Eve Marielle will have been "turned on" for a month. Her hearing skills are extraordinary. Except in loud environments, she understand everything I say and can repeat back sounds. She can hear and repeat Ling sounds that are so soft I can barely detect them.



Unfortunately yesterday she started refusing to wear her implant. A little investigation on our part found her processor is rubbing a blister behind her ear. The implant is still protruding quite a bit beneath the skin and the processor (and/or the huggie) has been rubbing up against it. If that weren't bad enough, the coil magnet is too strong and has caused a red spot.

Of course this all goes down the night before we are leaving town for Christmas. At least I found her hearing aid (no, I didn't lose it for a month - who would do such a thing?!) so she can wear that in her other ear. I was looking forward to showing off her CI magic though!

We'll see what a day or two of rest does. That plus my magical steroid cream - which I'm pretty sure could regrow a limb - might be the answer. Or I could just drive all over the south begging CI centers to open and see us. There's always that option.

Report from Week One

Marielle's first week with her CI has gone tremendously well, better than we ever could have imagined. I am very pleased with her progress and I'm glad she was activated with a long holiday weekend to stay home for five straight days of do it yourself AVT. I'm also grateful I've had almost 3 years of training from great teachers of the deaf and knew exactly where to begin.

After about 3-4 days I could tell Marielle was starting to make sense of noises like our telephone and cuckoo clock. By the end of our long holiday weekend I really felt that if I was close enough and she could see my lips, she could understand most of what I was saying. By today, 8 days post activation, I could stand 12 feet away with my back to her and ask, "Do you want a gummy bear or a gummy fish?" and have her understand me. I can play music in the car or sing to her and she can identify the songs.

She's not as great at identifying voices she doesn't hear regularly. If you want her to understand you, you'll just have to talk to her more, I suppose. It's amazing how many people think that as soon as you pop the implant on she can hear perfectly. It's even more amazing when such an opinion comes from an SLP who supposedly has experience with deaf kids, but that's another topic for another post (tentatively titled: "When Mama Bears Attack: If you make my kid cry again because you yell at her for not understanding you, I will actually kill you.")

Marielle has only tried to take off her implant twice - both times in noisy restaurants where I too wished I could take a break from hearing. I put it back on within 2 minutes and she was fine. When the coil does fall off she loves to put it back on herself. Sometimes when we put it on in the morning she yells something hilarious like, "I CAN HEAR!" or "YEAH, MOMMY! YOU DID IT!" When we use the smaller Advanced Bionics battery and an ear mold, it stays on just fine.

More later on that SLP story. First I must go sharpen my claws so my sneak attack will be most effective.


Here are a few videos from our first auditory rehabilitation session, 7 days post activation.

Practicing identifying Ling sounds - with our wonderful therapist who does actually know what a CI is:



Arguing about what noise a boat makes:
 


Taking a quick break to take care of baby:

Efficient

I just saw this online and it made me laugh:

The activation is typically scheduled for two days in a row: four hours on the first day and two hours on the second day. During this visit the clinician programs the speech processor, setting the appropriate levels for each electrode from soft to comfortably loud.

We were out of there in 45 minutes! I think our AVT was kind of disappointed that she drove so far just for that. I was disappointed I wasted $4 on batteries for the video camera!

For those who are curious and knowledgeable about such things, all 16 electrodes are on.

Unlike the kids on the dramatic YouTube videos I've enjoyed for years Marielle has had some access to sound since 3 months of age. Therefore while this sounded different to her than her hearing aids, it probably didn't sound much weirder than some of the musical instruments Barry has dragged home and didn't even come close to being as cool as the day she first heard and responded. 

I'll still be excited the first time it's clear she recognizes speech through her CI. I think it will happen sooner than any of us expect. 

Activation Day

There is a 15+ minute long video of Marielle's cochlear implant activation at Johns Hopkins today, however I haven't even bothered looking at it much less posting it as I promise it would put you to sleep.

We had been prepared for crying, screaming, flailing, the throwing of the implant - everything. Except for the fact that they could turn it on, she would dutifully respond with the play audiometry and not even seem bothered in the least. Which is exactly what happened.

They set 3 programs and we were hoping to slowly move up level by level. Each level is a little louder and more intense than the last. By hour 3 we were on the 3rd program and she still wasn't bothered at all. She does like to take it off and look at it, and then tries to put it back on herself. It's hard to get the magnet to stick over her afro-like mane, but we're working on it.

She's very protective of her CI and doesn't like Barry to help with it for whatever reason. "No, daddy. That's not your processor, that's MINE. Don't touch it!"

The only change I noticed after activation was how quiet she became. About five minutes after we left our very brief appointment she started talking, but only whispering. I wondered how long that would continue, but five minutes later she was back to normal.

It's obvious that she has no speech perception abilities right now with her implant. This hasn't stopped her nonstop chatter, however. It's probably her ideal world.

Though it would have been great to have her implanted as a baby, it's also pretty terrific to have a kid who on the day she is activated says the following:

"Look! A swimsuit!! Whose is it? It Mari's swimsuit! It's so pretty! Take off my clothes and go to the swimming pool! Mommy! Get your swimsuit! We go swimming!"

When we made it to the hotel pool she started playing with some older kids and talking at them. I guarantee they had no clue she was deaf; they just thought she was two.

Tomorrow morning we go back bright and early for them to turn it up some more. We're hoping for a guest appearance by Marielle's not-so-secret crush, Dr. Limb!