Contest from www.cochlearimplantonline.com

Giveaway Contest: Medic Alert Bracelet by Michelle

November 8th, 2010 by Rachel

Cochlear Implant Online is excited to host another giveaway contest.  This time, it will be open to international readers!  Michelle at Custom Leather Jewelry by Michelle Verbeeck, a shop at Etsy.com, is generously offering one of her fashionable medic alert bracelets to give away.

All of us, cochlear implant users, should be wearing a medic alert bracelet or some form of medic alert jewelry as we cannot have an MRI scan and surgeons cannot use monopolar cautery, a surgical tool, in surgeries.  Rather being safe than sorry, it is a best to wear a medic alert jewelry piece so that whenever something happens to us, emergency officials can be aware of our issues.  However, I understand that many medic alert jewelry pieces are ugly and unfashionable, and I will admit that I refused to wear one during my teen years. Michelle is here to change this situation!  She wants to us to be safe and fashionable at the same time.  Her leather medic alert bracelets are absolutely trendy and would look great on both boys and girls, and men and women.
A winner will receive a bracelet that is either 1 inch, 1 1/4 inch or 1 1/2 inch wide cuff, a choice of leather color, a choice of metal, a buckle or snap closure, and of course, their own choice medic info on their bracelet.  She has a WIDE variety of choices of colors of leather:  black, chocolate brown, golden brown, red, mahogany, maroon, orange, blue, royal blue, purple, yellow, green, kelly green, navy blue, turquoise, and deep teal.  She also has a good selection of metals: brass, nickel, copper, or sterling silver.
How to enter:

1. Visit Custom Leather Jewelry by Michelle Verbeeck at http://www.etsy.com/shop/MichelleVerbeeck.  Look around and buy something, if you can!
2. Leave a comment telling which color of leather and metal you would choose for your bracelet!
3. You can earn an extra entry by tweeting about this contest and make sure you include @CochlearImplant in your tweet.  Please add a comment if you tweeted about the contest.
4. You can add another entry by blogging about this contest.  Please add a comment if you blogged about this contest.
5. You can earn an extra entry by posting about this contest on Facebook.  Make sure you put @Cochlear Implant Online in the status and set the post to be seen by everyone.  Please add a comment if you posted on Facbeook.

The deadline for the contest is Monday, Nov. 15th at 5PM EST.

http://cochlearimplantonline.com/site/?p=2219

Evan wants a Diet Coke

Yup, this child is deaf

I'm very slowly working on a video called "Yup, this child is deaf". It will, of course, feature Evan. I'm more and more amazed everyday that a child who was born deaf, can talk, listen, and understand like he does. I need to share his achievements with the world. I'm so proud of him.

I will warn you, it's going to take a while. I'm not procrastinating, i'm just very busy. As all of you other parents know, it's a full-time job, on top of your paying full-time job. And to top it off, he's hard to film because he likes to watch himself being filmed. Which means i have to flip the viewing window around for him. I have some footage already, but i want a lot more. Then i get to edit it together, which i've never done before.

Wish me luck!

Nap time

Nap time is almost always a challenge. I suppose Evan is no different then any other child. Just now he decided to throw all his stuffed animals out of his crib. Then he asked for them all back, then one by one he threw them to the floor again. He finally asked for them again, and this time he decided they could stay with him.

Moral of this story: If your stuffed animals piss you off, just keep throwing them out of your bed till they decide to be nice.

I wish

I wish I knew what the world sounds like to Evan. I'm curious to know what it's like. I can't wait for the day when he explains to me what he's hearing.

Dreaming of the Nucleus 5

It may seem odd to others that i dream about hearing technology. It doesn't seem odd to me. The Nucleus 5 from Cochlear makes me drool. One of the features of it that sold me is that it's water resistant up to 3 feet. Do you have any idea what that translates to? Evan can hear in the bath, in his little kiddy pool, and in a regular pool as long as he doesn't go deeper then 3 feet. There are so many other amazing features that make it so beneficial over his existing device, but the fact that they're water resistant is so amazing to me.

It may seem trivial to those with children who hear normally, but it's not to me. Bath time is fun, it's genuine, and it's important. For Evan, bath time is 100% quite.

By the way, I just received information from Cochlear on the Nucleus 5 today in the mail, that's why i'm excited all of a sudden. Be expecting future drooling posts as i read on. The information also included the trade up program prices. So i can say, with certainty, the Nucleus 5 will be out of reach for Evan for a long time. The dream will continue.

"I want money"

Evan said to me last night "I want money". He knows what money is to an extent, well he knows that it buys toys. He's seen money laying around before, bills and coins. He doesn't understand denominations though, he's only 2, give him another year. He also know when i go to work i make money, which is used to buy toys. Don't get the wrong idea, my entire income does not go towards toys. I've simplified the idea of working so he would understand why "daddy has to leave".

So back to his original statement, "I want money". My reply to him was, "So do I".

You just don't look disabled

I wanted to share this. :)

Hearing in the dark

Its difficult raising a child who's only deaf when he's sleeping. You might think that's an odd statement, but I'm sure I can explain.
We're used to Evan hearing, so we communicate with him as such. When he falls asleep the "ears" come off, and he's as deaf as a door knob. His CIs aren't just waiting beside his crib for him when he awakes. The batteries are removed, and put in the UV sterilization/drying box with the equipment. All the while his other set of batteries are on the charger for the following day. Its the same routine every night, we alternate batteries on the charger and everything is sterilized.
As any parent will tell you, children wake up in the middle of the night for a variety of reasons, Evan is no different. Its an art form trying to sooth a child who's not happy, sick, or just awake at the wrong time. Now imagine doing it deaf. We could go downstairs and put his CIs together with the batteries from the day that just passed, its takes a few minutes but can easily be done. But that's not the point. Generally, when the ears go on, its morning, or after his nap. They wake him up, stimulate him mind. Unless he specifically asks for them, which he does, then we leave them off in the middle of the night. He can talk without them, but he can't hear himself, or anything else, as the door knob comparison explains.
I've come up with my own little ways to communicate with a deaf child. He doesn't know sign, so it's not that. When he requests something, I put up 1 finger, which means wait. I guess I do this when his ears (I'm going to stop with the quotes now) are on because he understands that what he wants is on the way. There's also a lot of pointing, such as pointing to where his head should be, instead of where it is. For the most part it works. He'll say "daddy sit", which is self explanatory, I sit on his rocking chair and he lays back down.
The hard part happens when he's sick and wakes up. He has his normal every-other-week day-care-cold so he's been waking up. Its nice to sooth him, talk to him, rub his back. The back rubbing works, the talking happens, but the listening does not. I guess we just find a way, and work our own magic.
It must be weird to only hear part of the time, since he does know the difference. I think I would be anxious if I couldn't hear the noises around me, and on top of that its dark. I'm not sure how he deals with it, when he's old enough to explain I'll be asking him. I have so many question to ask him, so much I want to learn. I look forward to the day when he can teach me even more then he already teaches me every day.

Eating chips

I just recently realized that I can email blog posts directly from my blackberry. I'm going to take advantage of this and post a picture.

Evan is sitting on the kitchen floor with me eating chips, multigrain tostitos to be exact. I'm not sure why, but for as long as I can remember Evan and I sit on the kitchen floor and have snacks sometimes. I guess its just a thing we do.

Audiologist appointment

This morning Evan saw the audiologist for a routine mapping. He hasn't had a mapping in a long time, so its been a while since he had to have the coils on his head without things working.

He's at that age where he knows when they're broken, and it really frustrates him. Naturally he was very annoyed this morning. They were able to eventually get the information they required, and new maps were programmed. The new map is very similar to the old map. I don't really have exact details on what changed. Our current audiologist doesn't explain things like are other one does. Our original audiologist is coming back from maternity leave in May, just in time for the next mapping.

After the mapping we had to go to the lab. They call it a lab, but its not the kind of lab you may be imagining. No test tubes or microscopes. There's a special computer, different connectors, and a bunch of other stuff that I haven't bother to ask about yet. Evan is part of a study. That's how he was able to receive bilateral implants. So every time we see the audiologist he visits the lab. It doesn't hurt, they basically just attache their coils to his head and measure brain stimulation with a special cap that goes on his head. It tells them how well he's hearing, and they can compare his old results with new results. The brain answers more questions on its own then his mouth could.

Evan really wasn't in the mood for the lab today, so the two technicians just played with him for a bit and then we went home.

That's it for now. :)

Clear-er

As each day passes, new words are spoken. Those words are now becoming easier to understand, clearer. Gone are the single word sentences, now i expect 2,3,4+ words in a row. I know he can do it, that's why i expect it. He may only be 2, but when i speak to him i feel that he's listening, and understanding at least some of what i'm saying. He still talks gibberish, but that's normal for a child his age, normal hearing or not.

This past weekend we were at a 2 year olds birthday party. Evan is very quite amongst large groups of people. I attribute that to many different things, since i don't know the actual answer. I would assume that listening to 15 people talking over each other is a lot of work, it is for me at least. Maybe he just needs time to process, maybe he just wants to listen. I did notice that he talks very quietly at these types of events. It's really very cute. I don't think he really knows how to raise his voice. He knows how to scream and yell, but talk in a louder voice, not so much. I guess that's something we learn over time?!?!

I don't really mind if he doesn't want to talk, because he's doing what he wants to do, and that's fine. When i was in a quieter area of the house with only a few people around, he did speak up more.

As usual i had to explain the implants to anyone who asked. Nobody knew what they were, and they weren't expecting them. We always get the same questions, "Will he always have to wear those?", "Does he hear anything?". I guess i should be used to it, but come on, aren't those common sense? Will YOU always have to wear your glasses? Well, yes, if you want to see you will have to always wear them. Do YOU see anything? Come on, he wouldn't have magnetic coils attached to his head and a device behind each ear if he didn't hear anything. That would be like a completely blind person wearing reading glasses. You use the device because it's helping you, duh!

I don't lash out when we're asked questions. I try to teach and inform the best i can. Sometimes people just don't want to learn more then what they originally asked, and that's fine. I still try to add in some more info. I have my usual speech about how the implant works, in this weekends case it fell on "deaf" ears, no pun intended.

Then there was the 5 year old who kept asking what they were. I would explain to her in the simplest terms that Evan needs those to hear. After her last attempt at asking i compared the implants to glasses. I think she finally got it, or just grew tired of asking. Either way, this particular 5 year old was so sweet to Evan. She was playing with him, talking to him, trying to teach him things. That made me feel very good. I always worry that children won't include him because they don't understand. Unfortunately, it will happen. Everyone in life becomes excluded for one reason or another.

Excuse me while i tie my shoe

As far as titles go, this title has nothing to do with the content of the post. The title just popped into my head and i went with it. If you would like, i could mention shoes? Evan got a new pair of shoes this week, and a pair of slippers. Happy?

Ok, now on with the show. We had our normal AVT appointment this morning, and it went splendidly well. Tania was able to come with, by the way Tania is my wife, Evan's mom. I'm sure i've mentioned that before. Tania isn't able to secure time off work to join us, but she's off work due to an injury so she was able to sacrifice an hour of rest, for an hour of AVT. I do love it when Tania is able to join us, after all it's Evan's progress that we get to see. To me it just feels right when we go as a family.

Mila, our AV therapist told us that every year audiologist students get together and meet a child who basically exemplifies how well a child with cochlear implants and AVT can do. We were asked if we wanted Evan to be that child! What a freaking honour. That just shows how far he's come, what's hes overcome, and his amazing potential. I'm so proud of him.

He's just a normal kid...

He may hear differently then you and I, but it's still sound. He's just like any other child, he plays, laughs, learns, and cries. Is he special? Well, i like to think so. But what parent doesn't think their child is special? But is he Special? I still want to say no.

Just adding that capital S to the word makes me uncomfortable. I guess its just the stigmatism that surrounds it. Am i ashamed of my son? Absolutely not! Do i get uncomfortable when people stare? Absolutely. I just wish they would ask questions, rather then stare and wonder. Back to the point, my son is special to me, he's also normal to me, but to you, well, he's different.

Everyone is different. What are we comparing the "same" to? There really is no "same". Identical twins are the same, but they are the same as each other. But they are different from me.

It's all in our perception. I'm guilty of looking and judging, just like most people are. I wish i wasn't though. I've been judged by many, to assume otherwise would be foolish. We're all judged daily, but our collective differences are usual understood. It's those differences that we don't understand that confuse us and make us wonder. Our "same" threshold varies, because we're all comparing the different to something same.

I'm not going to change the world, i'm not going to change a city, i just want to change one. I'll be that one. If i better myself, my understanding of different and same, then i can better those around me. Maybe in 1000 years same will be gone, and everyone will just, be, everyone.

Amazes me....

As usual there is a gap between entries, but, good things take time, right? That's a poor excuse, i really should write more often.

Evan is doing amazingly well. He's using 3-4 words together sometimes. He's adding in the very important "i want", "hold it", "i need" and "please" along with his words. We've lost track of how many words he knows, since he just about repeats everything we say, though he doesn't necessarily understand it all. But he does understand a lot, i'm sure more then we realize. I often test him, i'll ask him questions, or just talk to him about stuff that i would imagine is a little out of reach at this stage, but he usual amazes me.

Another great achievement Evan recently made is he can put the magnet coil on his head. I've been waiting for him to figure it out, and it finally happened. He's known how to take it off, and what to say (ears) when it falls off, but that was the first time he's ever put it back on. The only problem is with the bodyworn cable that he has to wear right now, he'll put the coil on but the cord will route under his arm rather then over his shoulder. So it does have to be adjusted by us. I can't wait till his ears are bit enough to support the full weight of the BTE with the battery attached.

I'm going to sign off for now, i'll try to update this more often.

Broken

A few days ago Evan had a temper tantrum and his right "ear" fell off, that sort of got in the way of his little episode and he through it against something pretty hard. What ended up happening was the little connector on the end of the coil broke off inside the processor. All that was left on the end of the coil were some brass pins that are normally hidden by the black connector. I tried without luck to extract the broken piece from the processor, so i ended up gently inserting the pins where they should go. Thankfully that worked, but only as a temporary fix. I called Cochlear right away to order new parts, they had to contact our audiologist to get the MAP file for his right processor so they could program it and send it over to us.

The coil was very lose in its temporary home so i tried some superglue to hold it in place. That's something you never want to try unless you're desperate, which i was! That held for a day so we ended up using scotch tape. We should have used duct tape lol.

Cochlear is an amazing company, they didn't charge us for this, even though its obviously not a warranty issue. It would have cost us over $1000 to replace the processor, $200+ for the coil.