Sunday, September 28, 2008

Chance is a twin...and we never knew

Chance has started getting invited to more birthday parties from school this year. For the past few years, Chance didn't really get invited to the birthday parties since he lives in a different city from the other kids in his class. The parents of the other kids don't know Chance unless they help out in the classroom on a regular basis. Likewise, we don't know the parents and families of the kids in the classroom. I know the kids since I have volunteered in the classroom weekly in each of Chance's classes. I know a few of the moms through being on the PTA Board and helping with classroom holiday parties etc, but I don't know where anyone's house is, or anything like that.

This year Chance has been invited to 2 birthday parties from school so far. Both of them have been in public places like Chuck E. Cheese, a pizza eatery with video games, and various other kid activities. Chance has been so excited to be invited. I usually go and hang out somewhere nearby during the party as the locations are all 2 cities away in the same city where the school is so it is not worth it to go home and come back.

As Chance was talking excitedly about going to the birthday party yesterday, I was asking him about Antonio who invited him. Did Chance play with him at recess? Did he sit by him at school?

Then Chance got a smile on his face and said, "Antonio thought Katy was my sister!" Then he giggled.
Katy is the other deaf child in Chance's class and she also wears an implant. Antonio must have figured having the implants in common made them twins or at least siblings. I found that to be quite funny. Apparently so did Chance.

For the record, neither Chance's father or I are aware of Chance having a twin or a deaf sister with an implant:)

Wednesday, September 24, 2008

The proper place for implants

Chance just got home from school and as I was asking him a question to make sure that he had heard me, I wondered why I was not getting a response. It was then that I realized that Chance was only wearing one implant and I happened to be talking to the wrong side of his head. When he came closer, I asked him why he was only wearing one implant. He told me that the batteries had died and he didn't have any more in his backpack. We load that backpack continually with batteries in the front pocket it seems. And Chance has a reserve pack at school so I am not sure what happened but we'll be loading all of the usual pockets and cubbies with batteries.

"Where is your implant?" I asked Chance

It was then that Chance pulled his jacket which had been crumpled up in his back pack out and I started to breath a little faster. Fall is not the time to put valuables in a jacket pocket. The jacket is on in the morning, off in the afternoon and dangled while running to the van or back from recess in between. First Chance checked the pocket on the left, then the pocket on the right.

I meanwhile am having visions of Chance's school run through my mind. I see an implant laying on the sidewalk out where Chance gets on the bus perhaps. Maybe a lone implant alone in the wide hall leading from Chance's classroom. Or perhaps an implant partially buried in the grass outside the school.

I am wondering if I can get to the school and surround it with yellow police tape. Yellow tape running around the parking lot so that no car can get in and run an implant over before we have searched there. Yellow tape blocking the entrances so that we can secure the halls before some child inadvertently steps on the implant and a sickening crunch follows. We may have to buy a metal detector so that we can scan the grass for any objects with metal in them before any child can set foot on the premises.

Then, Chance pulls the implant from his dangling jacket and I am able to breath at a normal rate again. I discuss with Chance how a jacket pocket is not the best storage place for an implant as it can fall out of the pocket. Chance nods and heads over to restock his backpack pocket with batteries.

Looks like we get to go ahead with our regular plans tonight and the family will not be spending their evening searching the school grounds for an implant. How delightful:)

Friday, September 19, 2008

How Chance hears in an underground mine...

On our way to the Cochlear Implant camp, we stumbled upon a little town that gave tours of a real gold mine. We figured this would be a fun learning experience for the kids so we pulled off and took the road less traveled. After winding up a dirt road, we reached the small opening that would lead us inside the mountain.

We had a brief orientation by a miner and then we were led into the tunnel. We were able to see mineral veins and follow them along the wall and ceilings of the cave. Chance found it quite interesting, but it soon became apparent that the acoustics in the cave made it very difficult for Chance to hear what was being said by our tour guide. We would walk along in the cave while the guide pointed out veins in the walls or talked about the mining process. The sound would echo off the cavernous walls and bounce all over the place. Everyone was very quiet while the guide spoke, but Chance just wasn't catching the bulk of what was said.

I tried to interpret what was being said by pulling Chance aside away from the group so that we didn't disturb the others in our tour. Chance got some information and was genuinely interested, he just could not hear as well as we would have liked.

There were parts where he got to see and touch things - like when the tour guide let him try to hammer a spike into the hard walls like miners used to do so that they could stick a piece of dynamite inside to blow a section of a wall out. Chance thought that was pretty cool.

He also got to feel the veins in the wall and see where the miners worked. And of course, there were the legs protruding out of the rock where a miner fell under an avalanche of rocks when he didn't follow safety procedures. Chance's eyes got huge and I soon had to explain that the legs were fake.

Chance got really excited when he realized that he got to pan for gold. He got his pan and headed into the stream seeking the precious little nuggets. He and his siblings found some small nuggets and entertained us with stories in the van about all of the things they were going to buy with their new found wealth.

I don't know if there is a setting on the implant that would have helped Chance hear better in the caves or not. There were many tunnels hooked together, and it was drafty. Sound just bounced all over the place. We actually talked to our audiologist when at our next visit about the mining experience and he suggested a setting we could try on the implant to see if that would improve the sound. Unfortunately, we have no immediate plans to go mining to test out any settings on the implant.

I guess this experience may dim any desires Chance may have been harboring about becoming a miner. He thinks the mine is cool, but he doesn't appreciate not being able to hear while in the mines.

Sunday, September 14, 2008

Bee Stings and Baking Soda

Sitting in the house, my husband and I suddenly heard a frantic cry from Chance. Upon reaching the backdoor, we realized that he was sobbing,"A bee stung me! A bee stung me!" Chance does not usually respond to pain with such intensity. It was weird too because it was almost 8:00 at night, not exactly a prime time for bees to be out and about especially in September. Once in the house, Chance told us that he had set his hand on a bee while chasing his pet bunny. He wasn't exactly sure as he was focusing on trying to grab the bunny. Bunnies are speedy little pets that take some energy and determination to catch when they decide to hop across the yard.

We tried to remember what we had heard helped bee stings (other than 'Meat Tenderizer' of which we had none) when Chance started insisting that we use baking soda. I didn't even know Chance knew what baking soda was. We asked him why he wanted baking soda and he told us that it helped bee stings. When we asked him where he had heard that, he didn't answer as he was busy trying to convince us that baking soda was the answer to what ailed him.

Not being experts in bee stings, we decided that it couldn't hurt to put baking soda on the sting and in fact maybe if Chance "thought" it was helping, that would be enough. It worked either because baking soda really does help ease the pain of a bee sting or Chance was convinced that it would.

As Chance leaned against the counter with the sting under white powder, he paused in his whimpering to ask "Bees die after they sting you?" When I answered that indeed they did, he wanted to know why.
There is no harsher revenge than death to the enemy that has just attacked you. Chance seemed to be thinking that at least he didn't have to worry about that particular bee again.

After all the cuts, scrapes and wounds that Chance has received in his lifetime, a bee sting definitely seems to be at the top of the list for having the most impact on Chance's pain level. Go figure.

Which implant to choose...decisions decsions...

When you get an implant (at least the brand we chose), you choose two controllers (the battery compartment with the on/off switch, controls for which program, volume, etc... This is different from, and attaches to, the processor, which contains the microphone and the digital sound processing components). There are 3 different kinds. The regular over the ear piece that looks like a longer, bigger version of a hearing aid. This one takes three little round batteries and can have things like ipods plugged directly into it.

There is the "mini" which is a little shorter, and takes two batteries. It does not have the capacity to have devices like ipods plugged into it.

Then there is the body unit which has the littlest over the ear piece because the batteries are in a pack that clips onto your pants or in a pocket etc. A wire runs down from the ear piece to the battery pack. If the implant should come off for whatever reason, it is still attached by a wire to the battery pack. That was an appealing feature to us when we first got the implants. (It is often a desirable choice for toddlers with implants).

Between the two ears and their four controllers, we have at least one of each kind. Each one has its own advantages and disadvantages. The regular sized one is the same size for children and adults and tends to be big on little kids. Chance's ears are closer to his head and have actually stretched out since he has been wearing implants. At first the bigger implant was always slipping and sliding there on his ear. Chance's ears have stretched out though and have a little pointy part where the ear curves to attach to the head due to the implants. This slight point convinced Chance's brother and friends that Chance was one of Santa's elf last Christmas.

The mini fit better and we figured that at 6, Chance could live without an ipod plugged into his implant. He would be able to plug things into his other ear if the need arose.

The body unit we got mostly for sports and amusement parks etc. when the wire attached to the battery pack would help to keep the implant from falling all the way off.

Usually Chance wears the regular sized implant on one ear and the mini on the other. But every once in a while, he decides that the body-worn implant is the coolest thing since sliced bread. He is having such a moment now. He wants to wear a belt on his shorts each day for school so that he can hook the battery pack onto it.

He told me the battery pack implant looks like a cell phone that hooks onto your pants like the one his dad has. So it is cool.

You know as long as Chance feels his implant is cool, I don't care how he wears it as long as he can hear with it. Chance thinking his implant is cool is a nice touch.

Wednesday, September 10, 2008

The great outdoors

At the implant camp we attended, our family had the opportunity to go horseback riding. From the age of 6 on, kids have to ride on a horse by themselves. Most of the kids don't mind, and I figure the stable must be used to kids with implants who may not hear perfectly as they ride through the forest. The horses all follow a guide up front in a straight line and there are other cowboys and cowgirls scattered along the line to give aid if it is needed. This is the third year we have gone on the horse rides and the biggest catastrophes we have seen is when the whole line has to be held up while some little kid dashes into the trees to relieve their bladder.

There is the possibility that you get a horse that wants to nibble the grass along the way in which case, the cowboys and cowgirls riding along the line will ride by and tell you to pull your horses head and keep them from grazing. Chance's older brother got such a grazer of a horse and the scenario we found ourselves in was truly comical.

We were in a long procession of riders, Chance and his brother were ahead of me and their sister, who was sharing my horse. Behind us was Chance's dad with his baby brother whose head was doubled in size when the riding helmet was put on.

The setting was beautiful, with wind blowing gently in the trees, a stream running down a slight hill, and the sound of horses hooves clompimg along on the dirt path. Chance could hear us sometimes if we called out to him, but several times between the distance of the horses, the wind and the sound of the steam, he was clomping along without interruption from us.

At the beginning of the ride, we had been briefed not to let our horses get to close together. As luck would have it, Chance had a rather slow poke of a horse that would literally stop to smell the flowers along the way. This caused Chance's brother who was behind Chance to get nervous that their horses were getting too close at times so he would pull back on the reins to slow his horse down. Not wanting to waste an opportunity to graze, the horse would begin chomping on the grass. I would pull back on our horse which the horse didn't like too much, he kind of had a purpose to his walk that did not include slowing down.

So there we were playing out the same scenario over and over again. The cowboy or cowgirl would ride past Chance and tell him to give his horse a little kick to get him moving. Chance would not hear this advice and could not hear us when we tried to tell hi again. So Chance's horse would slow way down, Chance's brother would then pull in the reins on his horse who would immediately start to graze. The cowboy or cowgirl would come along and tell him to pull up on the reins and not let the horse graze. Meanwhile, my horse was flipping his head impatiently as he wanted to keep up our stride. Soon, my horse decided that if we were going to be slowing down at a steady interval, he should graze too. Then the cowboy and cowgirl would come by and tell me to make my horse catch up to the others as they had started to move. I don't think the cowgirl who rode by us ever figured out that Chance could not hear her commands. She just thought we were all slacker horse riders; She was never mean, just doing her job of trying to keep the line in shape. It got to the point where I was just laughing though as we went through our little ritual of Chance's horse slowing down and setting off the chain reaction with the rest of us behind him. I don't know what the people behind us thought as we continually slowed down.

We all had a lot of fun and Chance wants to do it again next year so all is well that ends well.

Sunday, September 07, 2008

Looking into the crystal ball of implant futures..

At the implant camp that we attended, we learned what was currently in the works for implants in the future. There is some good stuff coming!! We parents sat on the edge of our seats taking in what most likely will be available for our children. It was quite exciting.

One thing the implants will be able to do is hone in on peoples voices. So if you are heading to a restaurant with your wife, you would switch your implant to a seek option and the implant would hone in on the voice of your wife while you were in the car. Once in the restaurant, the implant would then hone in on your wife's voice and seek it above all the other noises around. How great would that be in such a noisy environment?!

Chance's dad and I have eaten with deaf adults several times in restaurants and though they have all heard really well, it has been a trial for them to hear sometimes over the clanging of dishes, the conversations coming from tables all around you and hearing across a long table.

Also in the works is technology that will allow implant wearers to hear quiet conversations from long distances. Like across a football field. Some of the dads started fantasizing about being able to hear the conversations of your opponents huddles during sporting events. At least your implanted child could hear the huddles.

As a mother, I envision this technology as being used a little differently. For instance, Chance suddenly realizing that he is "hearing voices" and then he recognizes that it is his mother's voice. She is calling him home for dinner as he plays in a field on the next street over. This could also work well at the zoo, amusement parks and at the library where whispering to your deaf child down the aisle can end up not being so quiet.

Of course, the presenter then brought up the point that discussing Christmas gifts would take on a whole new meaning if your child could hear from such a distance. Hmmmmm.

We all joked that our kids may be able to hear better than we do in the future.

It is kind of comforting to think about what might be available to us too should we loose our hearing as we reach the more "autumn' years of life too. Imagine the correspondence that could occur if Chance, and his dad and I all could converse across a football field.........

Monday, September 01, 2008

spiral ganglion cell regrowth...or "curing deafness"

We recently returned from a cochlear implant camp out of state where we got to mingle with other great families who have kids with implants.

I would like at this moment to send out kudos to the surgeon who performed both of Chance's implant surgeries....he lined up the implants perfectly. When you look at the back of Chance's head, the implants line up. This is not the case with some kids. Some bilateral implants are scewampas in their placement and on a boy with short hair, I appreciate anew the care our doctor took to line the implants up so that Chance looks good from behind.

I love going to this conference because we get to talk with other families and attend classes that teach us about implants from current possibilities to future technologies.

One of the biggest stumbling blocks for me when deciding whether or not to get the second implant was that ominous question of, "What about future technology?! Does Chance need one ear saved for future technology?!" I really struggled with this question. We finally decided that Chance's need to hear now out -weighed whatever phantom technology was coming. I have no doubt that the future holds great things as far as advancements for deaf kids. But I don't think that Chance will benefit from that technology while he is in school, training for a job and setting the foundation for his entire future.

In our study of the issue, we found that many experts on the subject felt the same. They felt that the kids of today would not be the beneficiaries of the technology that was coming such as stem cell regrowth etc.

At the camp, a gentleman was telling us about future technologies with hearing and implants. He was talking about spiral ganglion cell regrowth....the regrowing of the hair cells that help us hear.

Right after we got the second implant,. I heard that researchers had been able to regrow hair cells in zebra fish and were thinking that guinea pigs were next. I had a swift thought of, "Oh, will Chance miss out on that technology?"

At the camp we were told of a report given by a Harvard researcher at a conference on hair cell regrowth. Researchers apparently thought they were close to successfully growing hair cells in guinea pigs. (mammals even...closer to Chance's make up than a zebra fish:)).

There were some slides that showed normal growth of hair cells in the ear. The hair cells were growing in a very linear pattern. Then there was a slide of a deaf person and where the hair cells were supposed to be, was just a lot of empty space as the hairs were missing. The last slide showed hair cells that researchers were able to regrow in guinea pigs. It looked like spaghetti noodles winding up and around all over the place. No one knows why the cells grow back in that pattern and it is something that will have to be figured out along with some side effects that would need to be overcome.

Something fabulous may be coming eventually for hair cell regrowth. But I don't think Chance would benefit in time to give him the best advantage where with the bilateral implants, he has the best that is available for him now.

The man giving the presentation had recently adopted a deaf little girl. This is a man who is in the know of what is going on with implants and future technologies that are in now in development. And he is getting a second implant for his daughter.