Friday, July 27

Mapping is All Greek to Me!

Drew had his third mapping appointment yesterday. Before they began to update his map they put Drew in the sound booth to see what he was hearing currently. Depending on the frequency, he was hearing somewhere between 25 - 40 db! Can you believe it? Just one month ago a jet engine could be roaring right next to him and he would not have heard it. Now he is hearing within the speech range. Unbelievable! I sat in the sound booth with him ready to cry each time he would turn and look in the direction of the sound. I held it together, but I can't help to get emotional when he hears things that he has never heard before!

There was a audiologist from Cochlear at his mapping yesterday. It was simply coincidence, but nonetheless, very exciting. She looked over his map and made some suggestions to his audiologist on how to tweak his map. We are working to make sure that each of the 22 electrodes is programed for optimal hearing on all frequencies at about 15-20 db.

One thing that has been really interesting/perplexing to his audiologist is that his right ear requires a much more powerful map than his left ear. This can happen as a result of scaring in the ear, normally from repeated ear infections. The reason it is so perplexing is that Drew has never had an ear infection and does not have fluid in his ear. It was nice to have the Cochlear audiologist recommend turning up the power on the right ear to ensure he is hearing all frequencies the same. I think it made our audiologist more comfortable with her decision to turn up the power on his right ear again. It also made me feel better about his map in general. It is really nice to have a "second opinion," especially in an area that is so complicated.

During the whole appointment the audiologists (there were three total) were talking about NPT's, hugging the "T" line, impedance levels, the list goes on and on. I felt like I was in a room where everyone was speaking a foreign language. It makes it really hard on a parent when you want to know everything that is being done to your child so you can understand what you need to do to help, but everyone except you speaks a different language. As far as I was concerned, it was like they were all speaking in Chinese and I only understood English! I think I need to go back to college and take some classes on this stuff so I can understand it better! Now if I only had TIME to do that...

Drew is now on his most powerful map ever and is responding to just about every sound around him. Last night the most amazing thing happened. We were all four playing together, working on language and doing some of our "homework" from therapy. Drew crawled over to his sister's table and chair set and was trying to pull up on the chair. He is getting really close to being able to pull up on his own, so I watched him and then helped him just a bit. Once up, he was able to stand and hold on to the chair all by himself. That's not the amazing part. He stood there for a while not moving his legs or struggling to remain standing. It took me a minute to figure out what he was doing. Drew had found that there is texture on the seat of the chair. He was standing, raking his nails over the texture and LISTENING to the sound his fingernails made when he drug them across the texture. Can you believe it? It was the most amazing moment and made me cry. Even Drew's Dad had a little sniffle at that one!

Saturday, July 21

Makin' Some Noise!

What a difference 23 days can make! Drew is making new noises daily. This journey is so amazing and we have only just begun.

In the last 23 days the loud, screeching sounds that Drew made before his cochlear implants have completely disappeared. Now our home is filled with beautiful "singing" and blissful laughter! It is so pleasing to our ears. He will sit on the floor for half an hour singing. I think that he can hear himself doing it, so he is getting used to his voice. It is so much fun to just sit and listen to the little noises he is making.

Drew is even mimicking sounds that we make, such as "ahhhh", "mmmm" and even raspberries. Whenever he is sitting on the floor not looking at me, I will make the raspberry sound and he will mimic it and turn in the direction he heard the sound coming from. He'll give me a cute little grin, as if to say, "Yeah, Mom. I heard you!" It is truly amazing! Whenever he is eating, we narrate the whole experience. It goes something like this:

Daddy: "OK, Drew. Open your mouth. It's time to eat some bananas!"
Drew: Opens mouth as wide as he can and sucks every bit of banana off the spoon. (He's a hungry and growing boy!)
Daddy, rubbing his belly: "Oh, Drew. Banana's are yummy. Yummy, mmmmm."
Drew: "Mmm, mmm"


We are enjoying each and every day with him - and his sister. When Drew's Sister was born two years ago, I don't think we took the things that she did in developing language for granted, but I know that we did not have an appreciation for how children learn to communicate through hearing. When Drew was born with profound hearing loss it gave us a great understanding of this amazing process and for that I am forever grateful. Now everything that both of our children do in developing their communication is truly special. Just yesterday, Drew's Sister (who is two years, three months old) broke out the "Why?" question. Drew's Dad and I have heard it about one hundred times since then and we will continue to hear it for years to come. And even though it can be irritating to hear, we are just so thankful that she is able communicate with us!

Monday, July 16

Drew Can Hear The "Ling" Sounds (Video)

Drew is consistently moving through his different "maps" and is doing well. Yesterday we tested his hearing ability by having Drew's Mom sit behind him and make the "Ling Sounds". These sounds are 1) "aaah", 2) "oooh", 3) "eeee", 4) "mmmm", 5) "ssss", and 6) "shhh", and are supposed to represent the sounds that one needs to be able to detect to hear speech properly.

Here is Drew hearing the "Lings":

We were excited to see that Drew clearly responded to most of them and seemed to respond to the others when the sounds were made at close range. We will keep moving farther and farther away to monitor how well he is hearing, but this is a great start!

Wednesday, July 11

Therapy, Mapping and Mom's Out of Town

What a busy week! I am at my company's annual National Sales Meeting in Washington, D.C. Drew's Dad is a single parent this week and Grandma has been taking Drew all around Columbus for his appointments. Life is hectic. But so rewarding.

Drew had his first Auditory Verbal Therapy (AVT) on Monday morning. He did great! I haven't been able to read the full report, but according the the therapist and Grandma, he was able to detect a good amount of the ling sounds at close range, with his right ear performing just a bit better than his left. The therapist even said that she saw a huge difference in him, a bilateral kid, than what she initially sees in children with just one implant. Drew is already able to localize many sounds. This never would have been possible without bilateral implants.

Drew also had his second mapping this week. By all accounts, from the audiologist, Grandma and his teacher of the Deaf (who attended the appointment), Drew did great! I haven't seen the full report yet, but they were able to correctly program more electrodes in each ear and turn up the volume quite significantly. He left the appointment again with four new maps, which we will turn up gradually over the coming weeks. Drew's next mapping is scheduled for July 26th.

Later on Tuesday, Drew's Dad reported that Drew heard the "snapping" noise the fasteners make in his high chair when he was getting Drew ready to eat dinner. Just amazing! He is hearing new sounds everyday, responding to those sounds and is overall a very happy little boy.

One of Drew's therapists emailed me his therapy plan for the coming months. In the immediate future Drew will be able to identify the presence of sound, absence of sound and all of the ling sounds at close range, 3 feet and 6 feet away. This seems very reasonable and attainable, especially considering that Drew hasn't even been hearing for two weeks and has already made noticeable progress. I continued to read: Drew will respond to his name, wave "good bye" without visual cutes, meaningfully say "Mama" and "Dada". Can you believe it? My deaf little boy is going to be able to call me "Mama". What a wonderful world we live in!

Saturday, July 7

Fourth of July

We had a very nice Fourth of July. We took Drew and his sister to our local parade. We were so excited because Drew could hear so many of the sounds of the parade. He heard fire engine sirens, horns honking on the classic cars, planes flying in the sky and marching bands. It was so exhausting hearing all of those new sounds. Drew actually fell asleep on Pa Pa's shoulder about mid-way through the parade!

Drew Sleeping.

Notice the pockets that have been sewn on Drew's clothing to hold his BWP's. They are very cute and are easy to access in case his processors are not working properly.

This week of hearing has been so exciting! To see him respond to sound just brings a huge smile to my face and tears to my eyes. I was able to keep Drew awake while riding in the car. I didn't want him to fall asleep until we got home - and it worked! Every time I would yell, "Drew", he would open his eyes. Can you believe it? He will turn his head in the DIRECTION of knocking sounds we make while sitting at the kitchen table. He will turn his head and look in the DIRECTION he hears sounds coming from, be it our voices, the TV or one of his sisters noisy toys. It is completely amazing and would never have been possible without the wonderful technology of cochlear implants. What a wonderful journey we are on!

Happy Birthday, America! And Happy Hearing, Drew!

Thursday, July 5

"Is That It? I'll Just Pay Cash."

We got Drew's "Explanation of Benefits" for his bilateral, simultaneous cochlear implant operation in the mail on Tuesday. We had a little bet going on who would come closest to the total cost, but both Drew's Mom and I were way too low.

The total "Provider Charges" were a whopping $155,232.71! However, because our insurance company Anthem Blue Cross and Blue Shield evidently "gets it" regarding how important bilateral cochlear implants can be for a child (or adult), the total out-of-pocket cost to us is only $1,170.15.
As I constantly "meet" people from Spain, Sweeden, California, South America, and all over who are dealing with hearing loss, hearing aids or cochlear implants, one thing is clear. That is the fact that whether one has insurance that will cover their chosen "plan of attack" directly impacts how successful that plan will be.

We are the fortunate ones. Our insurance company (Anthem of Virginia) gave phone approval in under five minutes for a procedure that some families never get. (I'd like to thank those who have decided to cover this procedure, as it truly makes a difference for Drew. I'll never meet you, but if you happen to see this please know we feel you have done a great service to your customers.)

Some insurance companies (now the minority) don't cover cochlear implants at all. Other insurance companies claim that a second cochlear implant is experimental or not medically necessary, despite growing evidence that they do benefit the users.

Because most of us can't quite find it in the budget to write a check for $155,000, not obtaining insurance approval means that they won't be able to take advantage of the cochlear implant technology. Families often fight for months or years to get insurance approval, while precious weeks roll away. These vanishing months quickly close the window of time during which a young child can grasp the foundations of language, with it often closing before the appeals, court arguments and battles have concluded.

Make sure this does not happen to your child. If you have decided that a cochlear implant is best for your son or daughter, I want you to do two things:

#1 - Start the insurance approval process immediately. Don't wait. Don't assume. Request a copy of what is covered by your policy. Politely demand that your chosen surgeon or audiology team contact your insurance company right away for approval.

#2 - If you are having difficulty, contact the Let Them Hear Foundation. They help families battle insurance companies that deny cochlear implants (or a second implant) to those who need them. Perhaps you should contact them even if you don't foresee trouble, just to take advantage of their educational resources.

We are going to send our approval letter and explanation of benefits to the Let Them Hear Foundation so they can demonstrate to the other insurance companies that bilateral, simultaneous cochlear implants are being covered. I hope that in this way we will be able to help others "Turn on their ears".

Sunday, July 1

Changes to Early Intervention

The Secretary of Education is proposing regulatory changes to the Early Intervention programs that service babies and toddlers with disabilities as a result of changes in 2004 to the Americans with Disablities Act. We all have an opportunity to comment on changes we would like. You can make comments until July 23rd.

The Technology of the Future?

I am so thankful for cochlear implants! They are already giving Drew the ability to hear things he couldn't just a few days ago. But that doesn't mean that I don't feel sad sometimes that Drew is going to wear these the remainder of his life. Except at night. (What if there is a fire?) Except at the pool. (How am I going to tell him to stop splashing his sister?) And, oh how I already dread the other kids making fun of the fact that he looks different while on recess.

Or maybe he won't have to wear these the rest of his life? Check out this article.