Sunday, April 26, 2009

2 "ears" are better than 1

The official report from school is that Noah is actually holding conversations with them and responding to questions occasionally. He's had lots of issues with background noise in his classroom (don't even get me started on THAT situation) and he tended to keep to himself because, in my opinion, he didn't have a clue as to what was going on.
I got to see the improvement with two CIs first hand on Friday when I went to pick up Noah. He was able to hear his 1 on 1 saying goodbye to him and respond appropriately in spite of the facts that there were 2 classes of rowdy second graders in the hallway, he was facing away from her, and he was talking to someone else at the time. Wow!
He also seems to be doing well with just the new ear, although being the bad (read: busy) mom that I am, he hasn't been getting nearly the hour a day of new ear work that we had planned (closer to 30-45 minutes most days, and not at all yesterday). He's much more consistent about repeating the "s" sound from across the room than he was earlier in the week, has no problems answering questions about familiar books or topics, and seems to follow about 90% of conversation (only having trouble when I talk too fast or don't annunciate clearly). He is able to do all his ling sounds with background noise and although he still occasionally mixes up "oooooo" and "mmmmm" with each individual ear, he's getting them every time with the two ears together.
Overall I think he's a superstar and deserves some kind of award for his amazing brain-making-critical-connections abilities. I, on the other hand, am still a little overwhelmed at the have-to-keep-track-of-two-processors-that-aren't-interchangable-with-two-batteries-that-die-at-two-separate-times thing. Not to mention the get-less-sleep-and-do-less-housework-because-you-spend-all-day-Monday-going-to-Northern-VA-for-therapy thing. Maybe I should get an award too!?
I'd settle for a nap and a maid.

Saturday, April 18, 2009

Slow down, Noah!

Noah is moving way too fast for me with this new ear thing. I know that he's supposed to acclimate to this ear quicker than the old one, but not THIS quick. Our new AV therapist (the one we're starting with on Monday) said that for the first month or two we would be working on the "learning to listen" sounds from way back when. Getting him to turn to the "aaaaaaaAAAAA" sound, getting him to pick out the airplane from a group of toys when he hears it, etc.
So when we've been having new ear time (about 30 min./day right now), one of the things I've been doing (besides reading familiar books, singing songs, etc.) is I brought out all those old learning to listen toys. Day one when he picked the cow out when I said "moo" I was pretty impressed. Today not only was he hearing all of the learning to listen sounds, he was repeating them all correctly (no more robot talk - apparently we sound normal now). He was also able to answer simple questions about a familiar story after we read it ("What color is the fox?" - "orange", "Where was the rabbit sitting?" - "under the leaf", "What does a blue bird say?" - "tweet tweet").
I know he's not understanding things as well as with his other ear (obviously!) but he's picking up a whole lot more than I thought he'd be able to. Is that normal?

T Shirt

Those of you who know Noah know that he likes to make his presence known. One of Noah's favorite things to do is to sing boisterously while shopping. We get a lot of looks and a lot of comments. Most often I hear "What's wrong with him?" so I've come up with a helpful response:


Seriously people, there's nothing wrong with him. He just likes to sing. And it's not exactly polite to say "What's wrong with him?" He CAN hear you, you know. Has it ever occured to you that you might be the one with the problem? Just thinking out loud...

Friday, April 17, 2009

CI #2, day 3

Things continue to go well with Noah's new ear. He appears to be enjoying the extra sound he's getting very much. Yesterday at our second mapping he tested at 30-35 db in the sound booth and was able to repeat all the ling sounds. Yay! He does still think that we sound like robots when we talk if he only has the new ear on, but I imagine that will improve with time and therapy.
In the meantime he's trying to convince our cat that she should get some "new ears" from his CI surgeon. I guess he thinks she must be deaf too? She doesn't talk a whole lot, but she is a cat. I'm not so sure that cochlear implants would help with that.

Wednesday, April 15, 2009

2 Ears!


Noah's second activation went much like his first - a whole lot of silence. This time instead of crying he just insisted that he watch the Teletubbies. Just like the first time, he has acclimated very quickly to his new ear. We hadn't even left Richmond before he was begging for a trip to the mall to ride on Mr. Potato Head. He seemed fine with that, so we went out to dinner where he serenaded the other diners with songs from PBS Kids. By the time we finally got home he was trying to replace the headpiece when it popped off and telling anyone who would listen, "I like having both 2 ears!"

Wednesday, April 8, 2009

Noah+change=bad news

We learned today that:
1. our AV therapy center is closing in June and
2. they want Noah to see a different AV therapist for the next 2 months (his therapist was laid off in anticipation of the closing)

Last time we have to switch AV therapists it was a huge upheaval for Noah, and it was really rough for him at first. He loves that therapist now - he calls her his "gear friend" because she uses this gear toy to bribe him into repeating sounds.

Getting a new therapist along with a new ear and then losing that therapist after 2 months is such a bad idea on so many levels, so we're not gonna do it. (So there!) Instead, on Monday we're taking the lovely drive up to the Northern VA Chattering Children for a tour. If we think it's worth the (2 hours if there's no traffic) drive then we'll be starting up there as soon as possible. If we don't like it then I guess Noah's new ear habilitation is up to me.

I feel fairly confident at using AV principals at home. I mean the whole point is to indoctrinate parents so they live the AV lifestyle, right? It would be nice to have a bit of guidance, though. I guess in the long run it's better we just found out today, since I doubt we would've gone through with the bilateral surgery had we known a few weeks ago.

Any Advanced Bionics Experts out there?

The other day Noah was playing on the bed and his magnet came off. If it falls forward down his chest he is able to replace it himself, and that is just what he did, except that because he was rolling around it fell forward on the left side (the unactivated side). Here's the weird thing... his processor beeps if it doesn't make a connection, but it didn't beep. Something didn't look quite right but as I was doing other things (in and out of the room) it took me about 10 minutes to figure out what. He wasn't acting like he couldn't hear (if the cable comes loose or the battery dies he'll grab at it and take off/replace the magnet again and again as if hoping to reboot himself), but he also wasn't really responding to sound (I tried the ling 6 after I figured out the issue). So did he just activate himself? I called the audiologist and all they said was "don't worry". I'm not worried, just confused. What's up with that? Also, since that time I've caught him on 3 separate occasions trying to put his magnet on the other side. Anybody have any experience with something like that? I don't know whether he's just interested to learn that he has a magnet on both sides of his head, or if he's actually getting sound from it. But why didn't it beep?!

Sunday, April 5, 2009

TV test

It looks like this latest CI surgery definitely destroyed Noah's last bit of residual hearing. It used to be that if we turned the TV up to it's loudest volume he would turn around excited to watch his show. We tried this morning - nothing. Will it be worth it to replace that little bit of real sound with a whole lot of bionic sound? I sure hope so because there's no turning back now. I guess only time will tell.

Saturday, April 4, 2009

video

Bilateral

Well the surgery's done and things are starting to get back to normal. Noah once again had issues with vertigo, but this time he was too old to just stick in an exersaucer so I've been spending the last few weeks chasing him around the house to keep him from destroying his new ear before it even gets turned on. He's had some pretty good head bumps, but hopefully nothing that'll have any lasting impact! Activation day is a week from Wednesday so I guess we'll know then whether he's done any permanent damage to his "new ear".

Feeding Noah is miserable lately. Not surprisingly after two days of vomiting blood from the surgery and some extra nausea caused by the vertigo, eating was the last thing on Noah's mind. Noah's feeding therapist gave me a good pep talk this week, and I'm hanging in there, but it is definitely difficult right now. Some days I wish we just had a g-tube, but I don't know that that's the answer. I just wish I knew what the answer was!
I'll leave you with some surgery pictures and later I'll post a cute video of Noah telling me all about dinosaurs while we were playing at the botanical gardens.