Saturday, January 8, 2011

one month

Tomorrow will be one month post-activation for Lucas's 2nd ear. Oh how I wish that I could report that things have been perfect, and that he can hear beautifully, etc., but alas, I cannot. I am a bit... disappointed. There, I said it.

I do realize that it has only been a month, and I know that it will get better with age and time. But, with this CI, I had my expectations set really high. When he was first implanted, we were told to keep our hopes high and our expectations low. That way we couldn't be disappointed. We obliged, but last time he far exceeded our (and everyone else's) expectations. This time, not so much.

Okay... to be fair, he's not doing terribly, just not wonderfully. Clear as mud, right? I mean, at his 1-week post activation mapping, he was testing at 20-25 dB in the booth. That's exactly where we want him to be. So, his implant is working properly, and he has optimal access to sound. But, his brain is still not processing sound in his new ear like the old one. Okay, fine. I don't expect it to be either. But, I do expect to seeing glimpses of what he's processing. We're getting nothing.

But, as much as he's not showing what he's understanding, I really think he is. He just won't let on to it. I believe that he is so incredibly high functioning with the first ear that he simply doesn't like what he hears with the 2nd ear. He totally shuts down, and won't show or do anything with it. He retreats into his own little world, silent, then demands to have his old ear back. The most I can get him to wear his new ear alone is 5 or 10 minutes, max. One time, his amazing AV therapist got him to wear it for an entire hour. Unfortunately, Lucas turned 3 and we're not working with her anymore... sigh.

It hasn't helped that Lucas has been really, really sick since New Year's Eve: coughing, head cold, fever, ear infections, sinus infection. Yesterday he finally started feeling better, but he's still not back to himself. Today alone I think I put his 2nd ear back on 25 different times. He hands it to me and says, "I don't need this." He's still adjusting.

I can now totally understand why people get simultaneous, bilateral implants for their children. It would be so much easier to learn to listen with both ears at the same time. Instead, Lucas has a huge disparity between how he hears with one ear versus the other, and he's too young to understand why. Simultaneous bilaterals weren't an option for us though, so it's not like we made a regrettable decision. We would have gotten him the 2nd CI sooner, but that wasn't an option either. So here we are, doing our best. We continue to be thankful that he has a 2nd CI at all. Some day I know I will be singing the praises of 2 ears... when he's in the elementary school cafeteria, on the playground or when one of his processors breaks. We'll get there... I know we will. I hope to give a better report next month! :)


Melanie said...

Why do you lose AV services now that Lucas is 3? We bill ours through our insurance without any problems.

Hang in there! :)

Miss Kat's Parents said...

Give it time! Until about 3 months post Miss Kat was very "meh" about her second CI. Now, at almost 4 months, she INSISTS on both. She says "I need two to hear!"

How is his speech discrim in the new ear? Have you done any testing?

Also, we never made her wear it alone. Did your therapist say you needed to? Our audi thinks it is important to wear BOTH, all waking hours, so that they can learn to hear bilaterally.

Lucas'Mommy said...

Melanie - it's complicated, but she's 90 miles away and works for Clarke, and only services birth-3 through early intervention, and she's spread pretty thin.

Melissa - I can't wait to get to that point! I'm not sure how his speech discrim is, because he won't let us check. We go to CHOP on Tuesday, so maybe we'll find out more then. It was recommended that he wear both together most of the time, but spend some time with new ear alone.

Emily said...

Hang in there! I know this must be super frustrating for you, but I'm sure it takes some time to adjust. That's so great that he tested at 20-25 dB, at least!

Glad to hear Lucas is starting to feel better. We have been through a lot of sickness in my household too lately. Not fun! ;)

Miss Kat's Parents said...

Ok, here are my second CI tips.

Let him watch TV, but only with the new side.

We let Miss Kat to go to sleep with her new CI on and listen to music. That way she was getting stimulation but not having to listen to beeping. We just took if off after she fell asleep.