Friday, March 11, 2011

More On CJ's Cochlear Implant

As you may recall, I posted a week or so ago about the fact that there is some possibility that his internal device is failing him.  It could be that I'm in denial, but I'm somehow not overly concerned.  Yet.  I am admittedly scratching my head trying to determine how he can possibly be functioning so well, and have only two electrodes correctly working for him.  Could it be simply that he a true genius?  Probably. That's usually the best explanation.

There are certainly some questions that need to be answered.  Only time and testing can answer a lot of them.  I have some frustrations with the fact that his hearing aid ear is still not being attended to because his audiologist is so concerned about the implant. While I understand that the implant is most important, I also think the aid should be set to perfection if we really do believe the implant is no longer serving him correctly.  The audiologist at Liam's school is MUCH more equipped and readily available to do the testing and make things better for him, but he has to be a student or an alumni there to be able to take advantage of those audiology services.  We may have found a loophole to make that happen, and I'll respond to that shortly.

If he is NOT having failure issues with his implant, why are we starting to see changes in his hearing capacity across the board?  What could be happening to change what was once working so well for him?  After attending a one hour workshop with the director of Liam's school, I implemented some of her ideas and started running some little at-home tests of my own. Because of that, I was able to send an e-mail to his whole team and get the ball rolling with open communication between the Dallas team, the new team, and Liam's school.  It's so pivotal in my opinion that every one of the players involved in a child's education have open and free communication with one another.  Sometimes something as simple as an e-mail sent to everyone can be all it takes to get that happening.  Once the communication starts working and team members compare notes, it's easier to decide what to do next.

I've copied and pasted the e-mail into this post.  The people involved are Kristi (CJ's teacher from TX), Betsy (director at Liam's school), Sara (CJ's current teacher of the Deaf), and Linda (CJ's former AVT).  Here is the context of each e-mail:

After all the other kids were in bed, I went in and "played a game with just him and me".  With him in bed less than five feet away from me, I turned my back to him so he couldn't read any body language or lips at all. He did have his DSi on very low, so that would be the only noise to speak of.  I asked him to repeat some words for me with just his processor, and then just his aid on. The results were lower with the processor, but surprisingly not by much at all.  Here's what I noticed:

1. When I had him repeat a string of NUMBERS after me, he got them right every single time without fail. 
2. When I had him repeat unrelated mono-syllabic words after me, he got less than 30% correct. We're talking words like dog, bed, cow, sit, frog, shoe, house, car, etc. All were very simple words that I know for sure he uses as part of his daily vocabulary.
    This leads me to believe that he got the numbers right because he was using the context clues (knowing it had to be a number) with whatever parts of the word he heard. When he was given totally unrelated material, he really could not get it.  He never did get one full set of three correct using words.

When I talked to Katie, the aud. at Dr. Clary's office, she said that her experience was that the NRT test is only incorrect about 3% of the time and that she does feel about 97% sure that we need to explant and then re-implant.  Until I played with him tonight, I was a little bit iffy on how accurate that would be.  What we don't know is how long this has been going on.

Kristy-Did you ever run any kind of testing like this on him when you had him, and if so, did you notice anything similar to this?  I actually expected better responses at least with the hearing aid than I got.

Sara-Have you run anything similar to this, and what results did you get?

Betsy-The rest of the questions are for everyone, but especially for you.  Given all this information, I am most curious as to where you would go with this information.  The Dallas team doesn't seem to put much stock in the NRT test.  The St. Louis team feels that the NRT should be heavily considered. The one thing both teams completely agree on is that the integrity test is the deciding factor, and that's where we're going from there.  

The Dallas team does say that the only NRT they did was at implantation and at that time, they found 6 working electrodes, but weren't worried at that point because apparently it's common to get lower results at the initial test. If he really was only getting 6 electrodes to begin with, does this point to him possibly not being a great candidate for implantation like with thought he was?  I feel like he's done GREAT with whatever he does have, so I'm inclined to be willing to try it again for him.

What should we expect in terms of auditory training if we do have to start over for him?  If he's only ever had 6 electrodes, it would seem to me that it's going to be very overwhelming to suddenly have them all working. I do recall very clearly that everyone was always shocked at how much he could be turned up without ever a complaint. Could it be that he never complained because they weren't really working to begin with?  Just how far back do you feel that this would put us?  Sara feels like she would be able to implement the needed auditory training, and I completely trust that she could. She's not let us down yet. I'm just wondering if you would do the same, which is to keep him mainstreamed and just intensify the pull-out time for training.  If you wouldn't do that, what would you do for him?

I think that's it for now. The integrity test hasn't been scheduled yet, but Katie is working on getting the first possible appointment for him.  Really, until that's done, I don't know that there's much else we can do. I'm not worrying until I am sure there's reason...although playing with CJ tonight definitely raised a few red flags.

Thanks, ladies!!  You are all amazing!!!


Reply from Kristi:

Just the facts. I'm trying really hard not to get emotional here (it's not really working, though).

We talked about this a little bit at the time but there was just SO much going on in your life and all I really had was just a "feeling" so I felt a bit silly and didn't push it.

I noticed around the end of Jan. into Feb. (the semester before you moved) that I didn't think CJ was hearing very well. No big deal, I thought. Everybody was sniffly and stuffy, CJ included, around that time. So, I thought maybe his hearing-aid ear might just be stuffy or full of fluid.

However, I never saw any improvement. So, yes I did sort of do some informal "testing" games with him. I can't give you specific percentages but we played with noise-makers of different pitches (somewhat like with Liam) and with my voice and with trying to find the location of sounds.

Here's what I noticed:

1. CJ was not hearing as well as I thought he did before.

2. He seemed to be relying on his hearing aid more than his processor.

3. Then there was a period of time when he didn't have his hearing aid and he seemed to have the most trouble during that time. This just confirmed to me that he was depending on his hearing aid much more than I would have thought.

4. He was relying heavily on visual cues, facial cues, and lip-reading. If he had his head down looking at his paper when I said something, I almost always had to repeat it when he looked up.

Things I noticed with his processor were that it didn't seem to matter to him whether it was on or off or if he was in the "wired" room or not. I don't mean that he didn't care if it was off his ear/head. He always wanted to be wearing it. I mean that it didn't seem to make any difference in his hearing/understanding.
As far as his hearing aid, he didn't seem as attached to it or overly-concerned that it wasn't working but he did seem more lost and was not hearing as well without it.

That last semester CJ just didn't seem his usual outgoing, curious self. He misunderstood more single words and asked "what?" more frequently. He seemed just a bit less confident, more tired, a little less excited about everything.

Keep in mind this was all during the time when things were very chaotic and confusing in his whole little world. All his things were packed in boxes, the house was in the middle of selling, you were gone some (to see the house and I think Liam was hospitalized then, too), he was staying with different people, AND he had been very traumatized by the tornado drill at school and was freaking out at every storm we had and we had alot of them that Spring. was kinda understandable that he wasn't really his usual charming self and appeared a bit more tired and not as "with it".

I just feel awful to think that maybe his processor wasn't really working that whole time!

As far as having more than six electrodes being overwhelming to him - I don't see that as a problem at all. Can't they control how much it's turned on and do it slowly so that he isn't overwhelmed? They turn it up/on as he can tolerate it. Is that right?

PLEASE let me know everyone else's input and keep me updated!

Love to all,

Reply from Sara:
I waited to respond to you until I got to work this morning and could give you percentages.  I worked on following directions with CJ using a visual lat Friday (3/4) and Monday (3/7).  On Friday he asked me to repeat 30% of the time.  He says, "I did not hear you.  Could you please repeat that again?"  On Monday, he asked me to repeat 50% of the time.  I will work with him tomorrow on following directions not using a visual and let you know how he does.
As Kristi said and as you and I have discussed, we are getting the answers to many of our questions.

From Linda:

You know his hearing better than you think his hearing had decreased significantly? It seems everyone thinks so. There are hard failures and soft failures. Unless I'm mistaken, hard failures are easy to's like the CI is broken and doesn't deliver sound. A soft failure allows a person to hear, but like they're hearing blurred, indistinct. I am NO expert on this, but that's what it appears. Has the Cochlear rep been called in to do an integrity test? That will be the real test.

Let me know what goes on and if you're going to possibly replace the CI there or here


Betsy opted to wait and meet with me today during Liam's parent ed. time, which was much easier.  Because of the open lines of communication, though, she was able to instruct Sara on some testing to do with CJ so we can begin to really gather quantitative information regarding where he is now versus where he was when we first moved here. Back in July, CJ went to Liam's school to have some placement and skills testing done, so that offers us some sort of baseline to work from.  I'm not sure it helps a ton because I think his troubles started early in 2010, but it's better than starting from scratch and working our way up.

As far as resolving our troubles with wanting him to have better audiology care, there may be a loop hole.  If he needs to be explanted and re-implanted, he will need intensive rehabilitation therapy.  In that case, it would be fairly easy to argue with the school district that spending the summer at Liam's school is better than just the standard summer school a lot of kids with hearing loss receive.  If the integrity test shows that his internal device is fine, then it is fair to reason that he is having trouble knowing how to use the hearing he does have. In that case, we can still try to say he should spend his summer at that school learning to use his hearing more affectively so that he will be prepared to learn using his hearing instead of learning through observation when he starts second grade.

Any way you slice and dice it, there are questions to be asked. I don't think we have many worries or fears yet. Just questions, and that's okay.  After all, if things were to be status quo all the time, I imagine I'd be just a little bored.

1 comment:

  1. Oh, goodness! I pray that you are able to get a very clear answer on whether he needs a new implant or not - it sounds like he isn't really listening with his processor right now. Thinking of you guys...