Wednesday, May 31, 2006

One last day with hearing aids......

So after 3 years it all comes down to this.....Chance has a cochlear implant, and tomorrow it gets activated. We are very excited and can not wait to see Chance's reaction. Our hope is that this implant is going to give Chance that little extra boost that he needs to reach his potential.
When we first found out that Chance was deaf about 3 years ago, we did not really look at the implant as an option for Chance. We looked to hearing aids and thought those would be what Chance needed. When you find out that your child is deaf, there are several different voices telling you what is best for your child. These voices come from professionals, books and other deaf people and parents of deaf children. It is a lot to take in. You just found out that your child is deaf, and suddenly you are expected to choose how your child will communicate. The thing is, no one can tell you exactly what your child hears, or how well they will adapt to any sort of technology. As a parent you feel such a responsibility.....you are going to choose a path for your child that will affect their entire life and you feel that you don't have all of the pieces to the puzzle.
From the very beginning, Chance let us know that he wanted to talk. I don't know if the reason had to do with the fact that he had normal hearing for the first year of his life, or if he just thought he was talking for his first 3 years. WE were the ones with the problem because we could not understand him. Chance always talked to us. We just did not always know what he was saying. We had a deaf mentor come into our home once a week who was teaching our whole family sign language. We took sign language classes for parents. And the sign language did help at first. But Chance never took to signing entire sentences. He would sign words to let us know what he wanted. He even made up his own signs when he felt the need. But he never really took to signing entire concepts. When the deaf mentor would come over, we would sign apple as the mentor held up a flash card and Chance would say "apple".
So we figured that the hearing aids were the best option for Chance. His language improved with the hearing aids and he started the language journey that other kids his age were well under way in.
Since Chance attended a preschool with other deaf kids, we were able to see cochlear implants up close and the first time I saw the scar from one, I vowed that my little Chance was never going to go through that. The little boy that I saw, had a huge scar that looked like half of his head had been peeled back. It turns out that that little boy had some extra problems with his scar, so his looked quite frightening.
We ended up taking out a loan for hearing aids that helped Chance immensely. The first thing that we noticed was that his new aids did not squeal all of the time. When you are a hearing person, that can drive you crazy. Best of all though, Chance could hear things he had not heard before and his language started to pick up. But the progress was slower than was expected. It was recommended to us that we meet with the doctor who does implants in the state of Utah. There is a board that has to give an ok to those seeking an implant. Chance was denied at first. We were not heartbroken at this news. We were not sold on the implant for Chance at the time. We only wanted what was best for Chance and if hearing aids was what was best, we were willing to go along with that. The board decided that since Chance had just received powerful hearing aids, we should wait 6 months and see how those worked. So life went on.
We started to realize though, that there were lots of things that Chance just was not hearing. We would all be sitting at the dinner table together, and Chance would ask what we were saying to each other. It used to be that if I was talking to Chance's brother, Chance didn't say much. But he started asking why we were laughing, or what I had said. It was apparent that Chance was realizing that he was missing out on things. It was heartbreaking to watch as a parent. Chance wanted so badly to be a part of things, but he just was not hearing like he needed to. That is what brought us to the implant decision. It was gut wrenching. We studied and prayed and asked a lot of questions. Finally, we decided that getting an implant was the best thing for Chance. The implant board agreed that Chance could benefit from an implant and we were scheduled for surgery last July. Then three days before the surgery, our insurance company sent us a letter telling us that they would not pay for the $80,000 surgery. However, our insurance told us that we were welcome to go ahead with the surgery anyway if we wanted. We would just be paying for it. Since neither of us had a treasure map or that much money in a Swiss bank account, the surgery was off. We ended up fighting for a year to get the surgery covered all of the time realizing that each day Chance lost critical hearing time. It was so frustrating to go through all of the appointments, do all of the research and then to be told that our insurance, which actually paid for implants would not cover ours. We had a rough year wondering how to get Chance the help that he needed and filing insurance appeals. We wondered if we should start doing cued speech which is a way to supplement what someone is missing with speech. After much effort by doctors, teachers, audiologists and ourselves, much prayer and divine intervention(I mean that literally), Chance was finally approved by our insurance company to get an implant. So tomorrow, the journey begins......

Sunday, May 28, 2006

The Parts of an Implant

The picture at left shows the device that was implanted into Chance's head. It consists of a magnet and a computer chip encased in silicon, the electrode array, and a ground wire. The magnet serves to allow the external parts to "stick" to it. The larger parts (the magnet and computer chip) are just under the skin in the skull, and the electrode array is the part that is actually placed into the cochlea.


Technically speaking, a cochlear implant is just the device that is implanted into the skull and cochlea. However, without something to tell the implant what to do, it is useless. The external parts of the implant are the microphone, speech processor, and transmitter coil, which also has a magnet to help it to attach to the implant.

The microphone, batteries, and processor are on an over-the-ear unit similar to a hearing aid. The processor converts sound into digital signals that it sends up through the wire to the telecoil.

The telecoil has a magnet in it to "stick" to the magnet in the implant. It also has a transmitter that transmits the signal across the skin to a receiver in the implant. The processor then interprets that signal to know which electrode to fire, at what rate and intensity, and for how long. (You can view an animation of this, as compared to natural hearing and hearing with a hearing aid, here.)

The magnet in the telecoil is replaceable, with more or less powerful magnets depending on the need.

Sunday, May 21, 2006

Hearing Aids vs Implant - An analogy

I've been asked what the difference is between hearing aids and cochlear implants. While ultimately they both provide an increased opportunity for people that are deaf or hard of hearing to hear, they achieve that benefit in very different ways.
First, it's important to recognize that cochlear implants are not for everyone - the qualification criteria (for being accepted to receive in implant) are very strict. The candidate must have a severe enough hearing loss and should also have a good support system, as an implant will require lots of work. Additionally, there are scientific tests that determine whether the candidate's inner ear appears able to accept an implant.
Have you ever been to a rock concert, or blasted the speakers at home or in the car (purposefully or accidentally)? You'll likely remember that the sound was somewhat distorted. You may or may not remember that the base amplified really well, but the higher frequencies (such as 's') did not amplify well at all.
Hearing aids work by amplification. The microphone receives the sounds, determines which sounds to amplify (according to its programming, based on the hearing loss), and then sends the amplified signal out through the speaker of the hearing aid (which goes directly into the ear).
Imagine standing outside in the wind. The 20 mph wind blows your hair, and you feel it. However, if you cut your hair to an inch long, you won't feel the hair move as much in the wind. Now if the wind is increased (amplified) to 100 mph, you'll feel the wind more, but it's going to be somewhat distorted. This is like the hearing aid. Now imagine if instead of increasing the wind, I reach out my hand and rub your hair, causing it to move. That's like the cochlear implant - it doesn't amplify the sound, rather it directly stimulates (electrical stimulation) the nerves that should be stimulated by the sound ('wind') but aren't.

On another issue, some readers have asked if we mind them forwarding the link to this blog on to others that would be interested. Absolutely, please do (as long as it's not to somebody trying to sell us something...). We would ask that you be considerate in who you send it to, and that you send us a courtesy email to let us know who else is reading this, but the point is to help. So far, some readers we are aware of include audiology students; parents considering a cochlear implant for their own child, and their family and friends who have had questions about what a cochlear implant is and what it means to the recipient.

Also, if you have questions about Chance, his implant, what it's like to have a deaf child in the home, raising a deaf child to live in a hearing/speaking world, or anything else related, feel free to email us the questions, or post comments in the blog.

Either way, drop us a note (email or comment to blog) and let us know who is reading this.

Thursday, May 18, 2006

Leg wounds and head wounds are not equal....

As luck would have it, Chance fell off of his scooter a few days ago and got some road rash wounds across his knees and elbows. Now those kind of wounds are very annoying and hurt quite a bit, but you would not think that they would trump a head wound inflicted on you when your head was drilled into......yet that is what has happened at our house. Chance seems to be much more protective of his knee and elbow wounds than of his head. His sister got too close to his knee last night bumping it and causing Chance to cry out in pain. Yet, his head does not seem to even bother him. Go figure.
Chance's head wound is now healed enough that he can put a baseball cap on it alright. This is good since it has been so hot and we don't want his scalp to get sunburned. Chance's head was shaved where the implant was inserted so that particular piece of skin has not seen the sun for a loooong time! Chance is doing so well. We feel very blessed. Even though Chance is using only one hearing aid, and his other ear is healing, he is talking so well. I wondered if going with out one of his aids would really affect his speech. There is some effect, but mostly just that Chance can not hear us as well. We thump on the floor a lot to get his attention around the house if he does not hear us. All of us in the family know that using a deeper voice, makes the probability of Chance hearing us greater. He can hear the lower frequencies better. I am used to doing it now, but I am sure that some of the people around us at stores etc. wonder if I have some sort of disorder as I talk to Chance in a much deeper voice than I do to my other kids sometimes. There is my normal female voice that I use with the other kids, and then the husky, manly voice of my alter ego voice for Chance. This is sometimes the only way that he can hear that I am calling him in crowded places or when there is lots of background noise. It is actually quite hard for Chance to hear us in a noisy store even with two hearing aids. But using the deep voice gives you a prayer that you might be heard. It gives new meaning to the theory that each child is different and needs a different approach to things.

Monday, May 15, 2006

Chance's Chances

Chance's wound is healing
nicely. 10 days post-op.
Chance's wound now looks muuuuuch better! He does not even seem to mind that he got a surgery. Today Chance went to school for a full day for the first time since the surgery. Chance felt just fine last week, but his sense of adventure and undaunted spirit made us a little nervous. Chance is sometimes on the playground at school with the 5th and 6th graders who are not thinking of a kindergartner who may have just had surgery as they push past to get to the slide. Combine that with the fact that Chance now only has one hearing aid, so he does not hear as well, and we thought it best to keep him home. Here at home, Chance was trying to climb over fences, and jump around with other kids in a blow-up jumping pad that our neighbors have. Chance was really good at not doing things once we told him that he could hurt his head. He would just ask us how many more days until he could jump, or climb over the fence. The thing is, Chance was not regulating himself because he does not seem to feel the need to. That is why God made mothers :)
Maybe it helps Chance that he can not actually see the wound like the rest of us can, so he does not see as much of a need to slow down. :)
Chance has been going to school with the same kids for 3 years now as they all went to preschool together so they are all good little buddies. As Chance got on the bus this morning, I heard the shouts of greetings from his friends clear over to the porch where I was standing.
There are indications that Chance has retained his residual hearing in the ear that had surgery. When a cochlear implant surgery is performed, some people retain what hearing they had in the ear, and others lose even that. We were praying that Chance would keep whatever hearing he had and there are indications that he still has some hearing in the right ear. Tonight, Chance put on some headphones and pointed to his right ear and said that the earphone was not working. When Chance's dad inspected the headphones, he found that they were not plugged in all the way and when the plug was tightened, Chance nodded and said that it was working now. This is an exciting development. It looks like Chance may have retained hearing in that right ear after all. We'll have to experiment some more to find out! Keeping the hearing that he already had, could benefit Chance in a couple of ways; number one, he will at least have some hearing as the implant can not get wet, and you do not sleep with it on. Also, if any new medical advances come along in Chance's lifetime, he will have some natural hearing to work with.

Wednesday, May 10, 2006

Pleasant Surprises

Chance and his cookie delivery

Chance had a nice surprise today. The doorbell rang in the late afternoon and instead of neighborhood kids, there stood a woman we did not know, holding a basket full of huge turtle cookies with bright colored frosting on them (and a cookie-card that read "Speedy Recovery"). She asked if Chance was here. Chance came to the door with his brother and sister in tow. They all stopped short and drooled as I signed for the cookie basket and brought it in inside. Upon further inspection, we realized that the cookies were from Chance's Daddy's work. Not even Chance's Dad realized they were coming. This is an especially nice gesture on the part of a company considering that they just paid $80,000.00 for this operation (the company is self-insured). It was a very nice and touching surprise. It is wonderful to have people around us realize just what a big deal this cochlear implant is to us. The fight to get it covered by insurance and the boost that the implant will give to Chance's potential, make this a major event in our lives. Chance's life will literally change because of this surgery. He will be learning to hear again in a new way. We appreciate all of those who have been there for us and who delight with us in finally getting the surgery. Gestures like this really mean a lot.

We had another surprise today: Appointments for activation day are complex, because you have to coordinate two different appointments at two different facilities, at either end of town. So, we had previously scheduled with the surgeon for his post-op visit on June 8th, but were unable to get hold of the audiologist that will actually activate the implant. By the time we did, she was booked all day on June 8th. So, we could either wait until June 12th (no thanks) or call and try to reschedule the post-op visit with the surgeon, moving it up a week to June 1st, when the audiologist also has an opening. We were able to do this, so now, Chance's activation date is June 1st. We just got a week closer !

T-minus 22 Days to Activation !

Monday, May 08, 2006

Happy Birthday Chance !!!

Today Chance turns 6 years old. It was a very exciting day, limited only by the fact that Chance can not yet get his head wet. The doctor suggested that Chance not go to school until later in the week, but we took Chance for a brief appearance today. We took in cupcakes and let the kids decorate them. Chance was delighted to show all of his classmate his hospital p.j.'s. He told us he wanted to show his school friends his p.j.s the first day he was home. Chance of course took off for the playground with all of the other kids, so we had to help reign him in. As far as Chance is concerned, he should not be limited in any way. Chance has only had 3 doses of painkiller since the surgery. He really does not seem to be at all fazed by his surgery. We did have some extra excitement when Chance came to me and showed me that a big chunk of the tape they used to cover the wound(the stuff that is supposed to stay on for a week), had been ripped off by his 6 month old brother. Part of the tape started coming off the day after the surgery, so we called Primary Children's Hospital and were told that it was ok, just to keep the rest of the tape on. The wound bled right above the ear, where the tape ripped down to. But the wound looks ok, and half of the tape is still attached. When we called Primary Children's Hospital about the first rip, they said not to apply neosporin or anything as it might loosen the rest of the tape. So, we will just desperately try to keep the rest of the tape on. Chance was concerned about the tape because we had told him not to take it off, not because he was in pain. He was very calm about the whole thing. He just kept trying to reattach the hanging tape. Kids never end up keeping their wounds covered for as long as they suggest, do they? Not unless the wound is located in the middle of their back where they can not be reached. Chances's classmates were most impressed by his scar. The funny thing is, half of his classmates have had the same surgery themselves. They were all really little when they got their implants though, so they probably don't remember anything. Of course, everyone that has seen his scar is impressed or slightly horrified until they realize what the scar is from. We are so excited about the implant. Right now our challenge is trying to get an appointment with the audiologist who will turn the implant on, the same day that we have a follow-up with the surgeon. We want the implant turned on as soon as we are given the go ahead from the doctor! Here's to the journey!

Sunday, May 07, 2006

Making Surgery Day Easier

You know, I'm sure if my head was cut open two days ago, I'd still be in bed - for two reasons, actually: Because I wouldn't want to get up, and also to milk it for all it was worth. I'm thoroughly amazed at Chance's bounce-back. He's running around the house, jumping up on things (and people), showing off for Grandma and Grandpa when they come to visit. And he's still only had 3 doses of pain-killer! 56 hours post-op!
So, with Chance's two brothers both having had surgery up at Primary Childrens' over the past 6 months, we were somewhat familiar with the procedure. So, Thursday night, the night before the surgery, we acted out what would happen, to help Chance be more comfortable with it. We acted out how we would drive to the hospital, then go to the waiting room and - his choice - play video games or watch movies. Then the nurse and doctor would come out and introduce themselves. They would take him into the next room - in his choice of a wheelchair, wheelbarrow, or wagon - and put him to sleep. Then they would bring him back into the waiting room where Mom was, and he would wake up. Then he would get to choose a slurpee - red or rootbeer - and watch TV, then go home.
Of course, once we'd done it once, all the kids had to have their turn being the patient, doctor, and nurse. So, we got to role-play it several times. I honestly believe that this helped Chance be more comfortable on surgery day. He really only had one moment of difficulty - when he said goodbye to Mom and Dad as he was wheeled off into the operating room - and even that wasn't too bad. (Many kids take some versed before going back, to help them to settle down and go back easier.) Chance was really a trooper on Friday.
2 days post-op, 33 days pre-activation, and counting...

First Glimpse at the Wound


Cutting off the bandage
Cutting the bandage off

Today at 3:00 we cut the bandage off. We were expecting a 4-cm incision - but found a 6-inch incision...I would have been in pain if that had been my scar I am quite sure. But Chance was just fine. Luckily, we had just had a discussion with his brother about acting calm no matter what the wound looked like just before we cut it off:) We gave Chance some pain killer this morning, and he didn't ask for or seem to need more through out the day. We did give him some pain killer at bedtime to help ensure a good nights rest.


The incision
Chance is delighted with the fact that he got to keep the pajamas from the hospital. This is not typical, but since we could not get Chance's shirt over his bandaged head, the nurse sent Chance home with his hospital garb. Chance loves this and can not wait to show all of his friends at school. His little friend that lives across the street has already been over to marvel with Chance at the great p.j's. Ahhhh, to be a kid again and be able to bounce back so quickly after someone has drilled into your head..... If Chance had his way, he would have been riding his bike today(balancing the bike may have been another matter). We are grateful that Chance is doing so well. Now if we can just get him to take the hospital p.j.s off.........

Friday, May 05, 2006

WE HAVE AN IMPLANT!!!!

The implant surgery

Chance: I'm getting an implant tomorrow!!'
Chance's surgery went very well today. The surgery was delayed about an hour and 15 minutes because the child before Chance took longer than they thought he would for his surgery. Chance was a trooper though and did not complain even though he could not eat anything and had been without food since midnight.
Chance went into surgery about 2:00 and we were summoned to post-op at about 3:20. Chance's head was wrapped in gauze that encirled his head. Over his ear, there was a "bubble" of gauze to protect and absorb blood. The blood actually was soaking through the gauze some, but we were assured that this was normal. Blood may even run down his face a little, but as long as the bleeding did not require us to apply pressure and soak all of the way through, it was normal. Chance layed his head on my shoulder all of the way home, kind of zoning in and out...mostly out. Chance has just been kind of mellow. As one would expect when ones head has been drilled through :)
As Chance was coming out of the anethestic in the hospital, he noticed the clip on his finger that monitered his blood pressure. It made his finger glow red. Chance woke up, stared mesmorized and enchanted by his finger, and then turned his head and went back to sleep.
We are so grateful to finally have the implant! We are so blessed and know the Lord has guided us to this point.
The wound will need to heal now, and in 5 weeks, we will return for a follow-up visit and the implant will be turned on. For now, Chance will use a hearing aid in his other ear that did not have the surgery. Thank you for all of your prayers and support! We have felt your love.

Thursday, May 04, 2006

Chance's Story

Chance was diagnosed as severely to profoundly deaf at about 35 months old. It was determined that he went deaf at about 13 months of age. He received loaner hearing aids through the Utah School for the Deaf, and later we purchased top-of-the-line Widex PowerDiva hearing aids. We fought insurance all the way to the top to cover the hearing aids, but our insurance company called them "cosmetic", and "an educational issue". We have been fighting for about 18 months to get our current insurance company to cover a cochlear implant. They finally approved it, and his surgery will be on May 5.
Come back often to check on the his status and progress.