Wearing a Neptune - Boy Style

The Advanced Bionics Neptune processor is awesome for kids- it is waterproof (so also milk, applesauce and other mess proof) and they don't have to wear something on their ear. The processor can be clipped to ponytail for women, or clipped to clothes for adults and kids.  But clipping the processor to a kid's collar  is a little awkward, though it works fine.  Putting the processor in the breast pocket of a button up shirt works- if you clip the processor in, and they don't quite fit all the way in the tiny little 12-month size pockets. I have also altered a vest Peter got by cutting a small hole in the back of the pocket and running the wire up the inside of the vest, and clipping the cable to the outside of the shoulder.

 The kid harness they gave us is bulky and awkward and too big for my big 12-month old. The lanyard was ok for the bath, but I am not comfortable having Peter wear something around his neck all day (choking hazard).  I have not yet tried the armband, which I am sure will be great when he is a little older. It seems a bit big right now.

In some spare time (haha right!) maybe I can doctor up a vest pattern to have good Neptune-sized and placed pockets, and distribute it.  I think a cute Safari vest,

 or a waistcoat, or even a cute orange construction-worker style vest...and there is this cute vest/hoody I saw that would be great to pocket a Neptune :) Other ideas always appreciated!

Is more better?

Speech therapy and aural habilitation are now art of our lives. I try to integrate the things the therapists are teaching me into daily life, so we are doing a lot of sing song, and repeating and emphasizing certain sounds. My challenge right now is finding which therapy approach resonates with me and engages Peter. We have the weekly visits with our Early Start teacher, the weekly teletherapy sessions which are part of a free pilot program, now weekly sessions with the specialist paid for by insurance (mostly paid for, still a $15 co-pay, which adds up with 50 visits/year), and then in the fall adding in classes a couple times a week and still going to the school for the deaf when we can....and I want to add in a Music Together class, too!

With Peter being kid number three the scheduled sessions/classes ARE a way to make sure he is getting at least an hour a day of focused time, but will it all drive us crazy? Will the different people and their approaches work harmoniously or at cross-purposes? My goal is mainstream school by kindergarten, my hope is mainstream by preschool- but I don't know what the right mix is to get us there.

This week we are trying to focus on "mmm", "p", and "b". I can sing songs and rhyme words and alliterate 'til I am blue in the face, but trying to get my kid to sit down and repeat what I am saying has so far been beyond me. Some suggestions were to have a bunch of boats and a tub of water, try saying "buh, buh, buh" and waiting for Peter to attempt some vocalization before giving him a boat, then repeat. I will gamely try this. My prediction: splashing will be fun, and he won't give a hoot about the boat. I was also given the idea to give balls to roll in a tube/ramp- the balls can be "b" or any sound we are focusing on, say the sound, wait, if there is any kind of response he gets a ball.  I know Peter will like this, but I bet he will go looking for the first ball instead of trying to get a second. I am also supposed to keep working on presence vs absence of sound with toys in boxes. This sort of works, but unless I find a sterile room with NO other toys Peter will not focus for long. And there aren't any rooms in my house that have zero toys ;)

Sound reaction notes: sneezing behind Peter freaked him out, as did the hair dryer. These weren't on purpose, of course, and once I showed them what it was he was ok. A couple toys that had crunching or revving noises scared him, too, but in general he just seems more engaged. He loves his noisy crazy sisters, too!

New Signs and Sounds!

Today I was getting out my bag of toys I have reserved for "Learning to Listen" playtime, and I got out an airplane. I said "ahhhhhh, airplane" and made the sign for plane. Peter signed it back! Granted, it was a baby version, with just an index finger instead of thumb, index, and pinky all extended.

But the intent was very clear, and he repeated it several times while holding or looking at the toy, and then again outside looking at a real plane!  So I spent a lot of time, spread out throughout the afternoon saying" ahhhh", and Peter did say it at one point, while walking with the toy plane. It could be a total coincidence, but it seemed like the sound was a little different than the noises he usually makes. He is a very vocal little guy, but usually he his more of an "oooh" er than an "ahhh"er. 

He is also signing ALL DONE, MILK, and he sort of signed STAR, but that last one was just pointing at them in a book, copying me, so I don't really count it.  I am not a voice-off ASL user at this point, so all my signs are accompanied by me talking, and I respond to Peter's signs with both hand and voice. I used ASL to reinforce words in the French classes I was teaching, too. I am probably screwing myself up to ever be really fluent in sign, but I hope Peter gets a lot of good vocabulary that he can build on in both signed and spoken language. 

Peter also starting making kissing noises today! I would give him a kis when he did it, so he kept going :)

Tomorrow we meet with the speech therapist our insurance covers. She sort of specializes in CI clients, but I also heard she is a little old school about sign. I guess I will know for sure after our meeting!

So far so good

When a Cochlear Implant is first turned on it is set at a really low level to give the brain a chance to adapt to the torrent of new information it is receiving. Peter should be hearing all the noises around him, but softly.  We are slowly increasing the volume this week, and will get three new levels (created within a program, or MAP) next Tuesday  

Peter is doing really well. I have slowly been turning up the volume, and he is now on the third program at about 2:00 (on the Neptune they have two dials, and the default setting is straight up to the mark, or 12:00, 12:00, more obvious the way the black model is shown below) we don't touch the sensitivity dial, but the audiologist told us to slowly adjust the volume dial using each program from 12:00-3:00, and that we could even go to 4:00, but at that point he would just be ready for the next program.

 Neptune controls (removed when in waterproof mode)

We have been playing games with empty and full containers to show presence vs. absence of sound. We have been playing a dance party game where Peter turns on his little music player, and we dance around while there is sound, and freeze when it stops. 

We have let him ring the wind chimes, or bang the pots, and I am trying to make a big deal out of it when I hear something.  But we are also just letting him play, and talking to him.  I am also signing when I am talking- as much as I know, in the hopes that he will pick up the spoken sounds as representing the object (like BIRD) just as the gesture does. 

Girls get to wear these cute headbands to hold their behind the ear (BTE) processor, but that would look silly on Peter!  He has a bodyworn processer, and it came with a harness, but the harness is a little too big. I have been putting the processor in a pocket of Peter's overalls. I am lucky- I have about 5 pairs of overalls- just happened to be in the clothes people gave me!  They work well if I clip the processor into the pocket, then clip the wire onto the strap. I read about a little boy who had a special-made vest, which looked like regular clothes, but had a pocket in the back.  I think there might be a need for some cute CI friendly boy's designs!

We also have an armband for bath or pool!  

Picture below is not Peter- it is from the advanced bionics website.

Left Ear Activation!!

Wow! To get to this post we had so many Dr. visits, so many hours of driving to different appointments, a new language (ASL) to learn, CT, MRI, surgery....and then when I watched the video of activation I found my husband had recorded it one way, and I had taken the camera and flipped it over....so I also had to learn video editing on my iPad ;).  But here we are, only two days after activation, and I can actually post something that won't give you neck strain from watching it sideways!

http://youtu.be/A8ppuZOlYIw

All cleared for takeoff!

Our second post-op appointment with the surgeon went well today. She said Peter looked great, and everything was healing perfectly. All the swelling is gone, and the incision is flat and barely noticeable. She just recommended having him wear a hat in the sun so the healing skin doesn't turn darker there. So that's that. All set to be activated next Tuesday.

I did ask if there were things Peter shouldn't do- like pop his ears, or blow his nose forcefully. Should I get him a medic alert bracelet about no MRI (without first removing the magnet)?  She said we should avoid head trauma, but that kinda goes for everyone. She said the bone really grows around these, and that the silicone cases are really very durable. I guess once she had to work on a kid who had an original ceramic case CI- the poor kid had walked into a pole and cracked the CI- but that should not happen to Peter!  She said most places are very careful about CI's and MRI, but she did know of one situation where a kid with a CI almost got an MRI (not at Kaiser, and the MRI didn't happen) so it is really up to us if Peter needs the bracelet. The ear popping, nose blowing? The concern is more about a ruptured eardrum if one does those things too forcefully. If Peter gets an ear infection she did say we needed to be very proactive and aggressive about treating it.  None of my kids have ever had an ear infection, so I hope that trend continues.

Last thing I asked about the right ear surgery.  She said she could put in a request for July- I said any time that month (other than the 4th), and if July gets full with non-elective surgeries, then August is still good. Phew! Somehow scheduling (well, prescheduling) the second surgery doesn't feel nearly as momentous.  Plus, now there is no choice/debate about two or one, so it feels easier.

Tomorrow is a play date at a park near the School for the Deaf. We haven't seen everyone for a while.  The school had a couple evening events (which just don't fit into our schedules) and so didn't have the usual morning meetings, and at least one day the school was closed. I am a bit apprehensive about possible reactions to Peter getting a CI. Not that I will hide it (I personally think it is so amazing I want to talk to everyone about it!), but perhaps I will be extra careful about ensuring the recommended sun hat is worn tomorrow.

Oh, the suspense!

Peter is back to himself. It has been just under two weeks since the surgery. Antibiotics are done. Pain meds haven't been needed for a while now, and today we finally took the steri-strips off that were covering the incision. I don't think it looks too bad, but he does have a raised area where the internal device is under his scalp.  (The last picture shows that- and only that, as my boy did NOT want to pose). As he grows that bump should be less distinct.

Now we are just preparing for activation. There are loads of YouTube videos of people (babies, kids, and adults) having their cochlear implants turned on for the first time. But that moment of joy, or fright, is just the beginning. We have a long road to teach Peter how to listen, and how to get the most out of what he will be able to hear.

I printed out the first week of the Sound Foundation activities, which are designed to be used from the very first week of activation.
http://hope.cochlearamericas.com/sites/default/files/sound_foundation/SF_Week1.pdf
I went to the library and checked out the book recommended for one of the exercises. I gathered up various toys for both the "learning to listen sounds" (http://www.listen-up.org/dnload/listen.pdf) and the Ling-6 sounds (the Ling sounds cover the different frequencies of speech, and, among other things, are used to test the equipment every morning). I think we are covered for all the transportation-type toys, but when I went to get animals, the girls informed me that the cats and dogs were all their favorites, and I couldn't take them. I did find a bath toy dog that will work, but I am still looking for a toy cat that will work. I need a cat for the Sound Foundation Week 1 song, too, so I better keep looking :)

I also visited the hearing aid audiologist on Friday, and she took the hearing aid that went through the washing machine. It is still under warranty, so she said we might as well get it checked out and repaired if necessary. She was very understanding...guess it happens more often than I thought.

Next week we have another Post-Op, and then the week after that is activation!!!  I can't wait!

At a play Peter was obsessed with the firefly costumes- he signed LIGHT so many times!