Thursday, July 22, 2010

Cutting and Pasting

We had several interesting lectures today, including lectures on the development of speech sounds, literacy and the deaf child, and how to create experience books. In support group, we wrote letters to our hearing children, telling them how much we love them- the letters will be read to the siblings in the sibling program on the last day of the clinic. After this session, we all went to the larger conference room and created two experience books.

The first was made by stacking four sheets of paper and then folding it over, so there was a "lift the tab" type book. The pages are stacked vertically (the blue and orange book in the picture), and you place all the text on the exposed tabs. The pictures are placed under the tab, so you lift it to reveal the picture after you've read the text. This reinforces the "listening before looking" method, and also demonstrates that text has meaning, since only the text is visible on the outside of the book. This type of book is very useful for discussing sequenced activities (you could talk about the steps in getting dressed, for example). One parent has made one of these with different items that need to be accomplished in the day, and the book has a reward chart on the back. When all the items are checked off, the child earns a reward (such as a sticker). Nolan's is blank, because we didn't really have time to finish the books. When we get home, I think I will make a book about proper conduct in the car (we don't scream or throw sippy cups at Mommy's head, for example).

The smaller book was made from paper lunch bags. Three were stacked, with the middle sack facing the opposite direction as the top and bottom sacks. The book was folded in half and secured, and this creates a book with a page/pouch style. You can place items in the pouch that relate to the text on the page. This one is very clever, and I can't wait to finish this one. I might do ours with a hiking theme. On the page, we will talk about walking through the woods. In the pouch, I will place things like leaves, pictures of rocks, birds, etc. that we would see in the woods. On the next page, I could place a creek and put items like frogs, fish, tadpoles, and swimming trunks in the pouch. I'll post images when we finish our books (probably not until we get home, unfortunately)!

John Tracy also had a book fair today (always bad for my wallet, since I love books). They also had adorable hats on sale for $1 each, with the John Tracy logo. For $1, I couldn't pass them up- I bought four of them.

Unfortunately, our SLT had to cancel our appointment today due to an emergency (I hope everything is OK)! We didn't get to talk about Nolan's audiogram, but we'll take that as it comes. I'm not sure whether or not I believe the new audiogram. We've had a few bone conduction tests at BHSC that show a rising sensorineural loss based on bone conduction, and his ABR at birth showed a rising loss with absent OAE in the low frequencies and present OAE in the high frequencies (consistent with a rising sensorineural hearing loss). I've drawn a very crude example of the difference between the JTC results and our audiology clinic's results:



As you can see, these are pretty conflicting results. I suppose, in the end, it doesn't really matter if he has these odd bone conduction scores if his air conduction is about the same and his aided testing is fine. He does have an air-bone gap, but I'm not keen on putting Nolan through exploratory surgery since he'd have to wear hearing aids no matter what (even if they could find and fix a conductive problem with his ossicles, he still has the sensorineural loss). And if his air conduction hearing aids work well for him, I couldn't see putting him through the implant surgery for a BAHA (bone anchored hearing aid). Plus, I don't even know if BAHA could handle the high frequency sensorineural loss that JTC is showing. There are a lot of unknowns, and it is difficult to integrate such different information into what we know about Nolan's loss.

All we do know is:

1. If JTC's results are correct, then Nolan has been misdiagnosed for three years. Since his CT scan is normal, he has type A tymps when his tubes are out, and he currently has no fluid and he does have patent PE tubes, there is no discernable cause for the "conductive" loss. He also lacks all OAE, and has since birth in this region. The only way to see if his ossicles are affected (since the CT scan was completely normal) is to do exploratory surgery, which has risks of its own. Especially since Nolan has central apnea.

2. If JTC's results are not correct, then we have to wonder why we are getting such variable responses from Nolan. At BHSC, it seems like he has lost some sensorineural hearing, or has a mixed loss. He has also had more than one bone conduction test at BHSC (by more than one audiologist), and these results have been consistent with a rising slope.

His results at BHSC are more consistent with his ABR/OAE testing at birth than the JTC results, but his testing seemed pretty reliable (his attention was well focused) at JTC. On the other hand, he was really well focused at BHSC when we got the rising slope bone conduction scores.

We have two completely different results, with very different interpretations... and no way to tell which is the "correct" answer. Push come to shove, we'll just leave his hearing aids where they are and ignore the conductive component, because he is developing speech and language with no problem with his current hearing aids. There's no way I'd put the little guy through more surgery for no real gain. On the other hand, if we could find the cause of the conductive component (if truly there), it might explain the cause of Nolan's hearing loss (if he had a congenitally fixed stapes or something of that nature that wouldn't show up on a CT scan). And if a BAHA would be significantly better than an air conduction hearing aid for him, it would be worth exploring.

When you have a kid whose hearing loss profile changes every time you step into the booth, you go through the grief process over and over again- including the denial/anxiety portion. If only these tests weren't so subjective!

9 comments:

Apraxia Mom said...

You really are being slammed with all kinds of information, both good and confusing, aren't you? I am still so happy that you had the opportunity to experience this with Nolan and I am sure you will be taking TONS of info and strategies home with you. This is an experience of a lifetime!

Miss chatting with you.

Talk soon,
Pattie

PinkLAM said...

Push comes to shove, you could always try the BAHA with the soft band (which wouldn't require surgery) and see if there's any difference.

Terena said...

I know! That went on for a long time with Queen Teen, but then over time the audiologist was able to get a big picture and many of our questions were answered. It just too a while (several years). Very frustrating.

Lucas'Mommy said...

I hope that you get some answers about your conflicting audiograms soon!

mamatoadeafmiracle said...

i hope you get some solid feedback about the audiograms soon!! on the upside you're at the RIGHT place, aren't you?? i can't believe you guys are at your halfway mark!! isn't it already feeling bittersweet!?

mamatoadeafmiracle said...

i hope you get some solid feedback about the audiograms soon!! on the upside you're at the RIGHT place, aren't you?? i can't believe you guys are at your halfway mark!! isn't it already feeling bittersweet!?

rouchi said...

Thanks for sharing these lovely ideas.I love them and I sure Prisha too would.Hope you have all your conflicts straightened out.Looking forward to more information from you.

The Wednesday Poet said...

Oh I feel for you. I wish someone would write a book in how to handle all of these mini-grief episodes. We didn't get our TC syndrome diagnosis (and I was rather attached to that diagnosis so was disappointed) but now are facing an even more scary diagnosis. We've been on pins and needles now for a week or two. I would be so thrilled now if hearing loss is the ONLY thing we are facing . . . .

So, right there with you on the roller coaster.

Indeed, your issues make me wonder if they really have Josh's hearing loss correctly accounted for.

tammy said...

Even though you're going round and round right now with what's going on with Nolan's audiograms, hopefully it brings some peace knowing you have professionals who are going above and beyond to help figure it all out. That with everything you're learning I'm sure can be somewhat overwhelming yet incredibly amazing all in the same breath. Thinking of you all and hoping you get some finalized answers sooner than later.