Friday, September 29, 2006

Letting Chance Weather the Storm

I have just come inside the house. I was out helping Chance try to fix his bike. Alas, it looks like it is a daddy job:)
While I was outside though, I witnessed Chance trying to keep up with friends who were on their bikes. With the distance of the bikes from one another, coupled with the outside noises of kids at play, cars and environmental sounds, it is a difficult task to keep up with the conversations between kids. Add a bike helmet covering the implant, and the odds are not in Chance's favor to hear what is happening between the other kids on bikes. He misses who are the policemen and who are the bad guys. Or that the kids are going to take a detour up a driveway to pick something up. No, Chance is not a part of any of that. Chance rides along sometimes falling behind or going the wrong direction until he figures out where everyone else is headed.
These situations can not be helped and all kids have issues that they must learn to work through as they relate to other kids. But sometimes like today, you see a child taking advantage of the fact that Chance can not hear as well.
This is one of the hardest things about Chance being deaf for me. I do not resent the fact that Chance went deaf. I do not feel that Chance is a burden. But my heart aches when I see Chance's deafness being used against him. Sure kids are kids regardless of whether or not they have perfect hearing. We all have memories of less than pleasant childhood incidents involving other kids. As a mother though, I see Chance go along not letting his deafness get in the way and pretty much going with the flow. He just catches up to the other kids if he gets left behind or readily becomes the bad guy if the other kids have decided that he is the bad guy. But to watch kids whisper so that Chance can not hear etc. seems extra mean since they are taking advantage of his deafness.
Honestly, most kids are accepting of Chance and Chance loves other kids. I guess we'll just have to let Chance weather the situations where a child or two decides to use Chance's deafness against him.

Thursday, September 28, 2006

Music to Chance's ears

Chance has discovered music again through headphones. He has always liked music, and when he wore hearing aids, he would listen to music through headphones sometimes. He always took the hearing aids off first though. Then he would crank the volume and we would wonder if he was going to blow out any remaining hearing he might have. Now when Chance listens to music through headphones, he leaves his implant on. In fact, he prefers to have the implant on instead of relying on his own little ears. The other night when I checked on Chance in bed, he had found headphones and was listening to music. We had already put the implant away for the night, but apparently Chance had decided he needed it back on for his jam session. When I told him it was time for bed and that he needed to put the headphones away, and took his implant, he was not a happy camper.

I am glad to see that Chance seems to be enjoying music more fully again. Since Chance did not lose his hearing until he was about 14 months, I remember when he was a baby and would "dance" to music. Chance started to walk by 10 months and I remember him literally running down the hall when I would turn the music on in the family room. He would really get into the groove so to speak. The implant seems to be giving him some satisfaction that he may not have had with the hearing aids. So Chance, Rock on!

Wednesday, September 20, 2006

Chance is making friends at school

Chance's mainstream school (the regular elementary school that he goes to) had its annual fund-raiser this week which is a carnival at the school. Chance got a shot to dunk his teacher in the dunking booth. He missed but his brother nailed it.

While we were at the carnival Chance was approached by several kids who came up to say "hi". Chance also pointed out several friends to us though he did not always remember their names, we were encouraged by the fact that he did know many of the names. These were all kids that we had never seen before so they must have been kids from his new class. It was good to see that Chance is making friends in his integrated class. Chance has not ever let his deafness hold him back, but as a parent you have nightmares about the other kids not excepting your child because they are different. Although, I have found many kids are just curious. Many have never seen a hearing aid or cochlear implant before and are just not familiar with them. Once you explain that hearing aids and cochlear implants help people to hear just like glasses help people to see, they understand.

We still need to have our IEP (Individualized Education Plan) meeting with all of Chance's teachers, a representative from both schools, people we feel will help us discuss Chance's needs, us, and perhaps a few other people. We'll go over Chance's most recent testing and talk about where he is and what he needs to work on. We all sit down and have a meeting about what Chance's goals are for the year and what the expectations are. We actually should have had an IEP before school started to help ensure that we are all on the same page and we could voice concerns, but we do not live in a perfect world as we all know. This has been a bit frustrating for us though as the IEP is an important tool to make sure that Chance is getting what he needs and all of us who work with him know what the expectations and goals are.

Thursday, September 14, 2006

An Ever Springing Fountain of Questions

Chance continues to be an ever springing fountain of questions. He is still asking us, his family, what we are saying to each other. He now picks up more words by himself, but struggles sometimes to understand the entire conversation. He wants to know what I said to his brother as he got out of the van. Who I was talking to on the phone, and what I said about him when he hears his name.
On the other hand, he picks up on things quite naturally sometimes. Chance was sitting at the kitchen table playing with playdough with his brother when I walked by and said "I think you two are cute!" As I walked away, I heard Chance laughing and saying to Jaden," She thinks we are cute!" So I don't know what the magic formula is for Chance to catch entire sentences or thoughts. Chances vocabulary continues to grow by leaps and bounds and his expression of thoughts continue to amaze us.
Chance is so inquisitive and does not want to be left out of anything. He wants to know what me and his brother are reading about and why we are laughing. That is another thing Chance wants to know...why something is funny. He likes to laugh right along with us, he just wants to know why he should be laughing. Chance has a good sense of humor which serves him well.
We continue to ask lots of questions about how Chance is doing in school. We want to make sure that he is hearing what he needs to there. Chance likes school. He does not seem to be getting too frustrated though school was only in session for a week before we pulled him out for his surgery and recovery.
This will be a very eventful year for Chance between mainstreaming at school and getting another cochlear implant. It is too bad that he is too small to keep a diary. I would love to know what he is thinking.

Tuesday, September 12, 2006

When a mother calls....

Today Chance heard me call him from all the way down the hall and into his bedroom! It was one of those situations where I was rather tied down with the baby so I could not get up and physically get Chance. I thought it worth a try to call him just to see what would happen. Now, granted the house was quiet. All of Chance's siblings were reading or being read to, so no one was talking or making noise. But Chance wasn't expecting me to call him either, so my voice would have had to catch his attention even though he was involved in something else. And Chance does get reaaally involved and focused when he is playing cars, legos etc. So, I called his name. And then as I looked down the hall, Chance's little body came running out to where I was asking, "what?" Is that great or what?! I really did not think that Chance would hear me. I am delighted to report that he did hear me and look forward to more such instances.

On a side note, Chance got his finger hit with a hammer today in an innocent accident where he and his friends were cracking open "dinosaur bone" rocks with a hammer. As a disclaimer, I did not know that hammers were involved with play time, but thankfully, Chance lived. He just lived with a lot of pain. So now, Chance has a wound running down his head and a swollen, bloodied finger. Where is his mother?

Saturday, September 09, 2006

The unveiling....

One of Chance's friends from school brought him a superman cake, with a message, "Chance, you're our superhero!" Having a light-up superman on your cake always helps you to recover faster:)

Chance slept through the night - no more throwing up, no more real problems (which was really good - he would not have liked watching Mom, Dad, Brother, Sister eat his cake for him) . Mom and Dad tag-teamed sleeping by him to be able to help should anything have happened.

This morning Chance was a little more docile than he was after the first implant. He just wanted to lay on the chair. Later in the morning, he approached me as I was eating a late breakfast and told me happily that he could walk again. It is always good to be able to walk. Then Chance wanted his friend from across the street to come over and play and he seemed pretty much back to normal.

So we took the bandage off of Chance's head today. Well, most of it anyway. We unwound the turban of gauze that encircled his head, removed the gauze "bubble", and got down to the square gauze pad that actually touched the wound. And then we stopped. Chance was telling us that he wanted to lay his head down on the counter and so we asked him if it hurt. He said it did, so we stopped and gave him some pain medication planning to take that last piece off when the medicine kicked in. Then we turned on a movie for the kids and now Chance is sleeping. So, we'll finish tomorrow :)

The surgery is a success!

The surgery was a success today. Chance took longer to come out of the anesthetic than last time, preferring to saw some logs than to pay attention to any of us. And unlike last time, he has been throwing up some. Not a pleasant thing for him but he is taking it all in stride. The nurses and staff at Primary Children's Hospital are wonderful. They always treat us so well and take good care of Chance. Chance is now sleeping again. Hopefully tomorrow he is no longer feeling queasy. Thank you for all of the prayers on Chance's behalf - we felt like we were being watched over during the surgery.

Thursday, September 07, 2006

Twas the night before implantation...

Chance is so excited about getting an implant tomorrow that he is almost giddy. He had a hard time getting to sleep and has told us step by step what will happen tomorrow. He has also informed us that he wants to play video games in the waiting room and that he wants to be pulled back to surgery in a wagon. And of course, he has verified that once out of surgery he will be able to eat a slushee. They give them slushee's in the recovery room to ensure that the kids can hold down food before being discharged. There is also a television mounted on the ceiling so that as you eat your slushee, you can catch a good show or two. That is once you can open your eyeballs for extended periods of time. So, Chance has a plan and is ready to go!!
Chance's sister has verified that we will take the bandage off of Chance's head to see the big owie. Apparently that made quite an impression last time.

Wednesday, September 06, 2006

Time for Another One !! ( No - we're not pregnant )

We find ourselves in a situation that we never could have dreamed of when Chance was first diagnosed as being deaf. Three years ago when our journey into deafness began, we were quite frankly against cochlear implants. They seemed so permanent and intrusive. We were of the opinion that hearing aids were just fine thank you very much. Then came our real life testing of hearing aids. For Chance, the aids were not giving him all that he needed to hear. Right before we got approval from the insurance company for the cochlear implant, we found ourselves in a discomforting situation. Chance wanted to hear and had chosen to talk. He had made that very clear by never really taking to sign language no matter how much exposure he got. However, the hearing aids were not giving Chance enough hearing power. He was missing too much and we realized that this would only get worse with age. The cochlear implant finally being approved was a God-send. We finally had a direction to go instead of continually treading water as precious time for language development slipped by. Now, 3 months after getting the implant turned on, Chance is doing wonderfully well. His vocabulary and language continue to improve daily.
Due to the success Chance is having with the implant, one might wonder why in the world we would consider a second cochlear implant. After much prayer, study, prayer, research, prayer, consultation with people who have two implants, and prayer, this is our reasoning in a nutshell.
First, there is the argument that technology might improve and therefore offer deaf people something even better than an implant. Anything is possible. In our research, though, predictions of a better technology seem to be at least 10 to 15 years out (and that is optimistic). For a medical time table, this is soon. In the language development window of a child, this is years of schooling and life experience that you miss out on waiting. Something fabulous might be developed someday, but if Chance was held back by language and hearing during his growing up years, his life choices will have already been impacted. Also, from our understanding, there is no proof that if something fabulous does come along, that people with cochlear implants can not benefit from the new technology.
Second there is the argument that there is not a lot of research on how bi-lateral implants benefit children. This is true. There is not the same kind of proof of the benefits for bi-lateral implants as there are for one. Bi-lateral implantation has not been around as long. Europe and the East coast have been performing bi-lateral implants for years now and they have seen positive results. Plus, for me, it just makes sense that if all of us have two ears, there must be a reason that having two is better. If people go blind and medicine can improve sight, they are not told to only fix one eye in case something better comes along.
We have spent the past several weeks going to conferences on bi-lateral implants, calling people from all over the country who have two implants or are the parents of kids with bi-lateral implants and reading everything that we could get our hands on. This has been a gut wrenching decision for me. I spent a lot of time analyzing everything from how much a second implant was needed to what could go wrong. In the end, I just feel that it is the right thing to do for Chance.
People that we have talked to who have two implants, report a significant improvement in social situations and being able to relate to people in group settings. Childhood is one big group setting of school, church, t-ball, family, and friends. Also, adults who have bi-lateral implants that we talked to, said that having two implants greatly diminished their fatigue in group settings. After getting the second implant, the adults found that having one implant had been exhausting. They had had to focus so hard on who was talking in meetings and in groups that they left drained. After getting two implants, they found that they could actually take notes in meetings and are much more willing to engage in group settings. They also express that they appreciate music much more. Couple this with the scientifically measurable benefits, such as localization (identifying where the sound is coming from), better distance hearing, better incidental hearing (overhearing, eavesdropping, hearing when not actively participating in the conversation), and better hearing in sound-to-noise ratio (testing hearing when white noise is present).
Given all of that, our analysis of the situation is that Chance will greatly benefit from a second implant. We attended a lecture where statistics on bi-lateral implants were shown. Kids who have had some hearing before going deaf, (those not born deaf), seemed to fair better with bi-lateral implants. That would be our little Chance. In the end, we are basically helping to restore something that Chance had at one time but lost due to unknown causes at about 14 months.
So, pray for Chance on Friday as he heads into surgery once again. And, of course, we will keep you posted on how that goes and the adventure of bi-lateral implants!
Oh, and thank you for following Chance's progress and taking this journey with us.
PS - If you didn't fall asleep while reading this novel, we love you all the more :)