Port Discovery

These pictures (again, iPhone pictures, so kind of blurry) are from Port Discovery, at Baltimore's Inner Harbor. If you're in Baltimore with kids, GO.

Morgan is climbing up to the sphere. This three-story "treehouse" is obviously the main draw for Port Discovery. Every kid made a beeline to it. After we lost McConn (it has entrances and exits on each floor) temporarily, each adult took a kid. I took Morgan, because she was in a funk and pushing her mom's buttons. I can't remember why now. Anyway, that's why most of my pictures are of Morgan; I only got pictures of the littles when they were in the water area with Morgie.

Getting off at the third floor.

The sports fan, intently trying to connect straight tubes at a right angle.

Making BIIIIIG bubbles.

That strand of hair is always in her mouth. But I shouldn't criticize her, because I used to do the same thing when I was young.

McConn was really good at this.

Yes, this turned into an argument. But they worked it out.

There was a little calf you could practice roping. It looked pretty hard. All of the kids tried, but nobody could do it.

I don't have a picture of the most eventful thing that happened while we were at Port Discovery--you'll see why. When we were ready to go, all of us made use of a hand sanitizer station. Eric, Maureen, Morgan, and McConn started down the stairs. I waited for Carson, who was lollygagging. I told him, "Come on," and then I noticed that he was rubbing his eye. Yup, he had hand sanitizer in his eye. He didn't even say anything! I had to ask him, "Carson, it is in your eye?"

So I told him to keep his eyes closed and not touch them, as I tried to remember where the bathroom was. First floor. We were on the third floor. Naturally. I took the blind child's hand and started toward the stairs then realized that duh, he can't walk down three flights of twisty stairs. So I hauled him up on my hip and jogged down the stairs, past his dumbfounded family, toward the bathroom. Do you know how heavy a 6-year-old is? He's skinny, but he must have bones of lead.

While I was washing out his eye, he asked me if I had taken him into the girls' bathroom. That was his main concern, not HIS VISION. I told him that there were no females present besides yours truly. He generously assured me that he wasn't mad at me for bring him in there. Because that was my main concern...

Jersey Shore

I realized that I never added pictures from when I saw the Honors in August. Here are some pictures from when we were at the Shore. (By the way, they are crappy because they were taken with my iPhone.)

This tub cracked me up. At a beach house? Come on.

Morgan was excited to receive my old cover up. I can't believe it fit me just a few short years ago. I'm way too fat now, ha.

Here I am, up on the roof. It was a windy day.

Can you see the ocean down there? It had just stopped raining.

Girly time. Here's what is going through Morgan head: "Ah, livin' the good life!" I thought a hot tub was totally boring when I was nine, but she loves anything luxurious.

Go Listen to This

Have I ever mentioned that I love Brandi Carlile? She's my favorite. No other artist comes close.

You can listen to her next album online here.

I can't wait to see Brandi's show at the Inner Harbor next week!

How Creative

Birds on the Wires from Jarbas Agnelli on Vimeo.

I love this!

What Can I Say?

There are so many things I want to blog about. With the perspective of blog=journal, I would love to be able to commit some of these thoughts to virtual paper. But I can't.

I can't talk about work problems. Unprofessional.

I can't talk about church problems. Inappropriate.

I can't talk about health problems. Disgusting.

What am I left with? Nonspecific positive stories about work or church. I guess that's OK, since I like to look on the bright side anyway. I try to be really careful what I say about my kiddos, because obviously I have to keep confidential things, well, confidential. It's just hard not to talk about these kids that I love. (Well, mostly love. A couple, not so much.) I do change the details about them, though. Luckily Laynie is fair game. And I do have my many opinions, which I enjoy expressing. Ha.

Well, here's something work-related that I wanted to mention. I was hanging out with some little friends at lunch, and I was asking a hearing child what her name sign was. The interpreter gave everyone in both inclusion kindergarten classes name signs, so that she would not have to spell all of their names. Unfortunately, I was not there when she gave them their name signs, and frankly, I'm still learning their English names. So I was asking this little girl's name sign and showing her some possibilities... "An M at your chin... An M on your chest (hm, that looks like "mission," nevermind)..." She sat there, thinking. One of my deaf friends got a little impatient with her (duh, how hard is it to remember your own name?) and signed WHICH??! with a facial expression that said, "I am communicating with a mentally challenged person." I love that kid. He is extremely intelligent, and he has a great sense of humor. He ended up helping the little hearing girl learn to fingerread her name. "M-*-*... That's you!"

Oh, I do want to talk about church. Alright, it was my class' turn to teach sharing time, and in our ward, that means teaching both Junior and Senior Primary. No lesson for my class yesterday. We had practiced our lesson and assigned roles last week (Circle, Diamond, and Rectangle were there), and we ran through it again yesterday during Junior Primary's opening exercises. Only Circle and Rectangle showed up. Square's grandma told me that he has been pretty sick, and Diamond's family often has other plans on Sundays. But Circle and Rectangle happily divided Diamond's and Square's duties between them. I was glad that Rectangle was so into teaching, because his behavior has been just horrible lately. Three weeks ago, his mother had to come into class and sharing time, and last week she had to come to sharing time with him again. In 10 years of working in Primary at a variety of levels, I have only called in a parent once before, and that was for an on-the-floor-screaming-and-kicking 5-year-old. Someone had sat in the chair she wanted. I say this to emphasize that Rectangle has been extremely difficult to deal with. And he's nine years old. Come on. Luckily, his mother and I are completely on the same page: she expects him to behave just like everyone else his age. "Well, he was good... good for Rectangle" is not good enough.

Soooo... yesterday. I had given each of them a copy of the lesson plan for sharing time, and they made notes and knew which questions they were supposed to ask, the instructions they were supposed to give, etc. During Junior Primary, Circle and Rectangle taught their hearts out. They did such a great job. They used "motherese" voices and brought their language down to what the little kids (Junior Primary is ages 3-7, but most of these kids were 3-5) could understand. They took to heart what I said about not telling a child that their answer is wrong, just encouraging them to think of more answers. They even tried to implement the classic Primary leader strategy of making off-topic or tangential answers right (e.g. "What has the prophet told us to do?" "Mommy." "The prophet does want you to listen to your mommy and do what she says."). While the little kids were drawing things that prophets and apostles have told us to do to strengthen our families, my two awesome kids went around encouraging them and trying to keep their drawings church-related. Some of our little brothers and sisters wanted to draw their favorite cartoon characters. Later, Rectangle sweetly encouraged them to use their drawings during Conference and to choose one thing to work on to help their family. Circle bore a strong testimony (completely uncoached) of the living prophet. All in all, it was a cohesive lesson, with great teamwork between the three of us. As we got going, the Primary president's jaw was on the floor. I had told her that I always have my class teach with me when it's my turn to do sharing time, but she thought I would just give the kids a couple of token duties. Nope. Nine year olds can handle more than we sometimes think. By the way, Circle is the Primary president's daughter.

Funny, during Senior Primary, things were different. The energy level was not there. I think it is harder to teach your peers.. and some of those kids are older than mine, which might have made them nervous. I had to provide more support for that lesson. But I know that they did their best, and I am so proud of them. I wonder if I should give Rectangle a role in teaching the lesson in class every week. But I don't know that it would work every week. Maybe I should have a pow-wow with his mom on that. Ohhhh... I could have a lesson partner every week. I know that Circle would love to help, the boys would enjoy having a leadership role (because let's be honest, the reason Rectangle was so good during sharing time yesterday was because he got to tell other people what to do rather than the other way around: during singing time, he immediately reverted to his usual, noncompliant self), and Diamond is always up for anything. I don't know, I'll have to think it through.

Sorry this is so stream of consciousness.

Oh, I enjoyed the Relief Society Conference. Barbara Thompson is such a good speaker. Very natural delivery. That makes it easy to learn from her. And I like Sister Beck tons. Now I feel mildly guilty for not loving Sister Allred more. I find it difficult to concentrate on what she's saying, because I'm noticing how she devoices voiced consonants, releases stops in final position, etc (she's from Columbia, I think). I also go, gee, she used to put a /g/ before her /w/, and now she very effortfully puts an /h/ in front of it, Utah style (Hwhy do they do that?). Someone has been coaching her. Yes, unfortunately, my nerdiness takes over. But even Laynie noticed Sister Allred's speech. Laynie asked, "Is she saying her stop sounds with lots of air?" She was noticing those released final stops. Laynie loves to analyze what she hears, trying to figure out why some people sound differently than others. My nerdiness has rubbed off on her.

Speaking of Laynie, she still can't hear a darn thing. But then she hears the bed creaking in the apartment above us. Maybe she's not attending to what she hears. Yesterday, I was going to put on some music while we cleaned up the kitchen (we made Lion House rolls). I started up a Sunday playlist, and Laynie was asking me to turn it up, because she could barely hear it. I think the neighbors could hear it. So I told her that she would be able to hear it better if she turned off the dishwasher (our dishwasher is loud), and she said that she couldn't even hear the dishwasher. But she tried turning it off anyway, and she immediately went, whoa, the music is much louder now. I guess it's good that she's doing the "hearing" thing of filtering out unimportant stimuli, but maybe she's also filtering out important stimuli. I don't know. She does better in auditory training when I speak very close to her. Wish she had an FM. But I go back and forth on using an FM system during therapy. On the one hand, it's not representative of real-world contexts. The real world has background noise. You can't put an FM transmitter on every person that wants to speak to you. On the other hand, structured training using an FM system could help her learn what words sound like, and then her brain would be better able to "fill in the gaps" when background noise interferes with the signal. Amplification has been shown to increase progress with phonological therapy with hearing children (who have phonological speech disorders), and aural habilitation bears a striking resemblance to phonological therapy. The whole auditory discrimination of minimal pairs training thing. But an FM system is an awfully large financial investment to make when I'm not sure it would help. Hmmm... I do have a materials budget from my agency, which I could put toward an FM system (I would use it with other clients in the future, I'm sure), but that would still leave a sizable cost to cover. It's something to consider, anyway.

I was just going to stop, but I realized I have a little follow-up to my recent diatribe against Cochlear. I saw the Nucleus 5 quoted at 4 mm thick, with a weight of 10.9 grams. Med-El's Opus 2 is 3.7 mm thick and weighs 10.1 grams. This is with the lightest battery option for each. Cochlear continues to claim that the Nucleus 5 is the "smallest sound processor." Eh? Not that the Nucleus 5 is huge, like the Freedom was, but you can't say that it's the smallest when it's simply not.

OK, now I'm done.

Comic Relief of the Day

Today in a kindergarten class, a girl tried to tackle a boy, but she tripped on her shoelace and fell flat on the floor. It wasn't funny at the moment, but looking back...

Hmph

I'm a little frustrated with Laynie's audiologist.

I love the guy. Don't get me wrong. He's so nice! But...

She's been having this problem with her left CI for several months, where she gets a tingly feeling, sometimes a quick stab of pain, and sometimes a feeling like there is something dripping or draining in her throat. The audiologist is just now thinking that maybe the CI surgeon should be looped in on the problem. Yeah!!

Until now, the problem has been handled by turning down the amount of stimulation at every appointment. I think she hasn't had as much pain recently, but the tingly feeling is still driving her nuts.

Now she's turned down to the point where she doesn't feel like she's hearing much, and she misses hearing what she used to. She feels like the volume is more similar to her hearing aid. Not good. It's not just her perception, either: I have to be less than two feet from her in order for her to hear well enough to do therapy. Awkward.

With the MAP changing every time she goes in (not just being lowered, but changing relative amplitudes on the channels), and with her going in every 2-4 weeks, she has not had a stable auditory representation of speech. How can she learn to listen when the way things sound keeps changing? She's done well with not losing ground, but she hasn't really improved her listening skills since the problem started, which the beginning of June.

And the new implant (blessedly no problems there) is set to the same stimulation level as the old (problematic) one. So the volume is low all around, and the new ear isn't getting a chance to get used to normal sounds, the way that the first one did.

I know that Laynie is disappointed not to be doing better with listening. She did hear a word last week. She flopped face down on the couch after she got home from work, and I said, "Are you dead?" She said, "Did you just say 'dead?'" It's not much, but when you've never understood ANYTHING auditorily, it's cool to catch a word here and there. I think that makes about a half dozen words that she has understood in context.

Laynie's next appointment is the first week in October. I really hope she gets a booth test. She hasn't had one since May, and she has had quite a few MAP changes since then. At that time, she was still looking rather hard of hearing (except in the higher frequencies), so if she's now saying that things were loud then and are quiet now... who knows where she is? Not where she wants to be.

BUT I feel like I should compliment Laynie publicly. I have been impressed and pleasantly surprised at the way she has made her CIs such a part of her life. I will admit that as she went through the candidacy process, I wondered if the nasty surgeon in Utah might be right: "Technically, you're a candidate for the implant, but I don't know if it would be worth doing, when you'll probably just become a non-user." I wondered if Laynie might take off her CI if things were loud of annoying, which they were bound to be sometimes. But she hasn't, even with the problems with the left CI. I wondered if it might be a phase, that she might get bored with her CI. She hasn't yet, and she even went for a second one. I wondered if she might give up if she didn't quickly develop auditory comprehension. Nope.

She's frustrated that her current MAPs are so quiet. But still, she puts her CIs on every morning and keeps them on until bedtime. The only time she has had one off during the day was for two days last week, when her audiologist told her to keep the left one off, to see if she experienced discomfort without active stimulation from the processor. But she still had the right one on. Not a day without hearing since the first CI was activated, on February 13.

I guess she likes hearing.

CI Stuff

Cochlear Nucleus 5

Well, the new processor from Cochlear received FDA approval last Friday. It's a handsome device, and the coil cable looks sturdier than the one on the Freedom. That is a welcome improvement. I know that a lot of people are excited about the Nucleus 5, but I'm underwhelmed. This processor brings Cochlear closer to where their competitors are, but there are no real innovations.

Remote control with bilateral capabilities? Med-El, check.

The remote can check the processor for problems. I don't think AB has anything like this, but I'm not sure. Med-El's processor automatically detects problems and immediately shuts off the processor, which usually repairs the problem (why does turning a computer off and on solve problems?) or at least prevents one MAP's corruption from affecting the other three MAPs. Automatic troubleshooting may be better than user-initiated troubleshooting.

If Cochlear's processors were as reliable as AB's and Med-El's, this wouldn't be such a concern. Cochlear touts reliability because their internal device is slightly more reliable (we're talking tenths of a percent) depending on how you measure it, but their processors break down more often than the other brands. That means people have to get an appointment with their audiologist or possibly send the processor in for repair. Hopefully the remote troubleshooting will help.

Small processor? Med-El, check. Sorry, AB, you know your product is a behemoth.

General listening program so that you don't have to change programs all the time based on the environment (how did their users put up with that for so long)? AB and Med-El, check. And Cochlear, check, because this came out six months ago!

Music program? AB and Med-El, check. Now I'd like to know how many Cochlear listeners actually enjoy music. AB and Med-El have made this data available on their website. They have different processing strategies specifically for music, such as broadening the spectrum of frequencies delivered to the implant (usually CIs filter out lows and highs in order to provide more info in the speech frequencies). Cochlear's music program basically just increases the sensitivity of the microphone.

Water-proofing? AB and Med-El, check. Laynie dropped her Med-El processor in milk, I rinsed it off in running water, and it survived.

The internal device is thinner than the old. It's 3.9 mm thick. That's down from the Freedom implant's 4.7 mm thick portion and 6.2 thick mm portion (most of the implants have had a thicker area that housed the electronics). Med-El's Pulsar is 4 mm thick, uniformly. Med-El's Sonata is partly 3.7 mm thick and partly 5.9 mm thick. AB's Hi-Res 90k is partly 2.5 mm thick and partly 5.5 mm.

Related to size: Cochlear's website initially said that their internal device is the thinnest implant. That has been changed to thinnest titanium implant. Hmm. The Pulsar is ceramic, and it's awfully close in size. I got the 3.9 mm number from the press release style "articles" popping up all over the web, because the specs are not on Cochlear's website (vague claims rather than hard data from Cochlear? shocking). We'll see if that 3.9 mm figure sticks. I think that if they were actually the smallest device, period, they would say so.

Cochlear is claiming "best hearing performance," which they are basing on CNC word scores.

But Cochlear is known to be an untruthful, unethical company, so I do not believe anything they say without checking the data myself. The graphic on Cochlear's website makes it look like there was a study of CNC word scores with all three brands and here are the results. Not so.

The graphic combined the results of several studies, which is very different from doing a single study with consistent participant characteristics and research procedures. Still, I don't understand why Cochlear is reporting CNC accuracy as 44%, when AB's research indicates 65% CNC accuracy for AB's current processor. Maybe because that research is unpublished? But Cochlear is using their own unpublished research which apparently showed greater than 70% CNC accuracy for the new Nucleus 5, without explaining anything about the participants or research procedures. Shady. AB gave a detailed explanation of their research.

Even shadier, the Med-El data on the graphic was from a retrospective study involving people implanted from 1998-2004 with Med-El's previous device, the Combi 40+. Why would Cochlear go back to this data rather than using data from Med-El's current system, which data have been available for a couple of years now? Besides, data on the Combi 40+ showed 55% CNC words, while Cochlear reports 45% for that system. ? Keep in mind that Combi 40+ users wore the old Tempo+ processor, and the current Opus processor (with Pulsar or Sonata implant) is superior. Med-El's newer FSP strategy is miles ahead of AB and Cochlear for hearing in noise (and AB is better than Cochlear). Maybe that's why Cochlear is comparing their current system to an old Med-El system.

Moreover, who ever said that CNC word scores were representative of real world performance? They're not. They are random consonant-vowel-consonant words without context. It's like if someone walked up to you and said, "Pit." Sure, you would understand them (if you're hearing), but would that ever really happen? Cochlear clings to CNC word data in quiet because their device cannot perform well in real world conditions, meaning sentences in the presence of background noise. People with CIs do not live their lives in a soundproof booth. AB and Med-El have been gearing their sound processing strategies (and, hence, their research) toward listening in noise for several years now. Sentences are easier than words due to context cues, but even sentences-in-quiet data is more similar to real-world contexts than CNC words in quiet. Cochlear can't quote sentence data, because their users are the lowest performers. So going back to the original claim of "best hearing performance," I'd say it's misleading. Customers might assume that Cochlear would result in best hearing performance in realistic situations, which is not supported by research.

I will be curious to see how Cochlear's claim of having the smallest processor plays out. This cannot be verified, because they did not provide the actual dimensions of their device. Med-El and AB both have extensive research and technical information on their websites, but Cochlear has never done so. When the Esprit 3G processor came out, Cochlear touted it as the smallest processor, but they were censured by the FCC for false advertising. In fact, it was the same size as AB's processor, and Med-El's was much smaller. Cochlear is no stranger to legal problems, especially with the bribery debacle. They were paying physicians to sell their product and to use their product exclusively--how do you think Cochlear became the "number one choice" of surgeons and, consequently, customers? They (Cochlear and physicians) were also swindling Medicare. All of this was reported by Cochlear's very own Chief Financial Officer, who left the company in 2004, when she brought her concerns to the US FDA. Who knows what Cochlear has been up to since then? Anyway, we'll see if Cochlear has to take back their size claims again or if they're actually telling the truth this time.

Yes, I'm a nerd. My nerdiness is one of my best qualities. But anyone with access to research journals could find this same information by spending a little time and applying a few neurons. Cochlear depends on people believing their marketing claims and seeing what the deaf kid next door has on his head. And listening to a surgeon or audiologist who may have received incentives to sell Cochlear's products. I prefer independent thought.

Gee, that was more than I intended to say.

Shysters bug me, especially shysters who prey on vulnerable, scared, probably grieving parents.

Love Them

Laynie and I teach the 9- to 10-year-old class at church, and I just have to say how much I love those children. One of the children who has had trouble being appropriate has really turned a corner over the last two weeks, becoming less concerned with being cool and making people laugh and more concerned with learning the gospel. He is still a little goofball with tons of personality, who has had a tough life (a few weeks ago he was telling me how his mom's boyfriend was in the hospital with sequelae of alcoholism), but I am catching glimpses of the real him now, as he sincerely considers stories, concepts, and questions. Every now and then he whips out a piece of gospel knowledge that makes my head spin. THIS child knows that Jonah was annoyed when the people at Ninevah repented and the Lord spared them?? How curious. The Primary president didn't even know that. I will call this boy Square.

The other children include Circle, a smart girl who is hungry for knowledge and has excellent literacy skills but is shy about participating; Diamond, a girl whose personality is the opposite of Circle's--Diamond is blissfully unselfconscious and shares any thought that crosses her mind; Rectangle, a boy who struggles with impulse control and seems torn between being good and being cool (he tries to impress Square and the kids in the 10- to 12-year-old class by calling out disrespectful comments and giving silly answers to questions); and Dodecahedron, a sweet boy with moderate autism. Unfortunately his family does not make it to church often, but I have learned that he hates touching grass, he is highly concerned with time and schedules, his scalp itches all the time, and he knows everything there is to know about dinosaurs. Every now and then his eyes make fleeting contact with mine, and it is startling. It's the best.

I love these kids!

Today's lesson was on Zion's Camp. Square and Circle were the only children there today, and they enjoyed doing a role play of the Zion's Camp story. Then we talked about sea glass. I'm sure you're going, oh yeah, sea glass, that's an obvious metaphor. Not so much for 9- and 10-year-olds. They had never heard of sea glass before, although Square wants to buy some on eBay now. We talked about two pictures I had brought: one of sharp pieces of a broken bottle on sand and one of smooth sea glass. We discussed how that happens, and I asked why they thought I was talking about that, how it applied to today's lesson. Square made the connection! Yay! He was so excited when he realized that we are like the glass. But he couldn't think what the waves might represent. I asked Circle to look at the vocabulary words on the board (we always do a short "signing time" at the beginning of the lesson to preteach the vocabulary), and she correctly selected trials. Yay! At the end of the lesson, they got off on a tangent, asking for details about where we'll be and what we'll be doing after we die, about our heavenly parents, pre-earth life, and on and on. It was such a stimulating discussion, and they were both so earnestly seeking knowledge, that I let it go for a while before bringing them back to the lesson topic. I spend a lot of time communicating (or trying to communicate) with special needs preschoolers, so it's a treat for me to talk with typical fourth and fifth graders. They have wonderful insights and ask great questions.

The sweetest thing happened as I began the Zion's Camp story for the role play. I noticed Circle babbling with her hands, trying to copy the signs she recognized (I was signing and talking at the same time). Unfortunately she stopped when she realized that I had noticed her. But seriously... CUTE. Love her. Actually, that's what I wanted to blog about in the first place, but I got loquacious.

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