Saturday, January 22, 2011

live united

Last year (2010), we were fortunate enough to have Lucas be the subject of our local United Way's campaign video. I blogged about it here, where you can also view the campaign video.

On Thursday we were asked to appear on our local television station to promote an event thanking all of the contributors to the campaign. Together, our county raised over 8.5 million dollars for the United Way. I can't help but think that Lucas's story helped contribute to that amount just a little.

We were only contacted on the day before the news broadcast, and I told them it would only work if they could broadcast from our home, due to the fact that we're at work by 7:15 AM daily. At 5 AM Thursday morning, the news van pulled into our driveway and our story was televised live at 5:30 & 6:30 AM. Talk about pressure to say the right things! We also recorded a segment to be played at noon. Lucky for us, we have a record of all 3 broadcasts, thanks to DVR. You can see the 6:30 coverage here. Although I did not script what I said, I had a couple of key points that I wanted to make. I wanted to praise the cochlear implant for giving him access to sound, attribute his ability to listen and speak to the hours upon hours of therapies he's received, and acknowledge the agency where his amazing speech therapist works.

We were then invited to attend the thank you dinner to wrap up the program. I spoke on stage about the miracle of the cochlear implant and how Lucas's success wouldn't be possible without the hours upon hours of therapy that have been provided to him. Lucas also spoke to the audience, thanking them for helping him, and saying goodnight.

What a long, but powerful day we had. It was our way of giving back and a reminder of how blessed we really are, how lucky Lucas really is. He was born in the right decade (universal newborn hearing screen & cochlear implant technology), in the right country (with great access to health care), to the right parents (I'll take a little credit here for my perseverance), with the right genes (let's face it, this kid was born to talk).

We are so, so proud of our little man, and so thankful to be his parents.

Sunday, January 16, 2011

a glimpse

another pic from the Please Touch Museum last week...

I believe that I've gotten a glimpse, yes I have. A glimpse of what Lucas is hearing with his new ear. One month and one week after activation, Lucas is beginning to show us glimpses of his sound discrimination. His willingness to listen with his new ear alone has increased. His overall interest of wearing them both together is improving too.

On Wednesday at speech therapy, he worked a little for his amazing speech therapist with his new ear alone. He was reluctant but compliant. He showed some glimpses of discrimination with some word-sound recognition. I'm really happy that he's willing to work for her. Love her.

Nate and I have both observed Lucas playing around with his magnets to see exactly what he can hear. He will temporarily remove the magnet of a his old ear, just for a few seconds, while his eyes pause in a contemplative gaze. He's testing it out. I love to catch him doing it. I always pretend like I didn't notice.

It was recommended that we pick a favorite book of Lucas's, and try to read it with his new ear alone. Because he's so familiar with the book, the brain is more likely to process that auditory information because the pathways have already been created by the book. I chose one of my all time favorites, Hand, Hand, Fingers, Thumb. I love the rhythm and cadence of the book, the repetition, and the overall silliness of it. Lucas likes it too, but it's my favorite (as he would say). I've been trying all week to read this book to him with his left ear alone. The first couple of nights he chose to go to bed without any more books at all, instead of listening with his new ear. That's how much he didn't want to wear that ear alone. Then we compromised, and he pops off his magnet long enough for me to read that page, then he puts it back on, and we repeat. That way he has control over what he's hearing. It's not my first choice, but I'll take it, definitely.

Tonight, Lucas let me do some Lings with his new ear. Again, he just popped his magnet off long enough to hear my sound, then put it back on. I'm super happy to report that he was accurately identifying ahhh, eeee, oooh and sssss. He thought mmmm was aaaaah, and shhhhh was ssssss. Although my hand was in standard AVT position so that he couldn't see my mouth, he didn't even look in my direction half the time. I was really quite excited tonight... and hopeful.

Tonight I was given a glimpse of the magic his brain is doing, little by little. It really is amazing and downright marvelous the way it all works. It's really intriguing to watch the emergence of sound discrimination. We're going to get there... and I've gotten a little taste of it.

Tuesday, January 11, 2011

sounds like garbage

at the Please Touch Museum today after our appointments...

We had a good day at CHOP. Lucas was cooperative, although he showed a bit of resistance with his new ear, when asked to wear it alone (not surprising). In terms of Lucas's access to sound, he's testing between 20 and 30 dB. The lower frequencies were testing closer to 30 dB, so he got a new program to help adjust that a bit. So, we know that he can hear well with that ear. The question is what he is processing.

During our speech session, Lucas showed great awareness to sound, including to all ling sounds. He is certainly trained to do conditioned responses! Next, she tried to see whether he could discriminate between long and short sounds (quack, quack, quack & boooaat). His appropriate responses were debatable. Even if he couldn't discriminate the two different words, he should have heard the length and rhythm of the sounds: "uh, uh, uh" vs. "uhhhhhhh". She moved on to see if he could differentiate even further between "up, up, up, weeeee," "it's bathtime; wash, wash, wash" & "night-night, shhhhh" (in coordination with appropriate objects). He was unable to do that at all.

We concluded that what he is hearing still sounds like "garbage" to him. He can hear it, but his brain is not making appropriate connections yet. There are a variety of factors that could be affecting its performance, including the ones that I mentioned previously. Again, I don't expect him to be hearing like he does with the other ear, but I would expect to see a glimpse of what he's hearing. He just shuts down and seems to not want to try.

It's only been a month, so we're just going to give him more time to adjust, and continue to provide him with opportunities to listen with his new ear alone. I left with some ideas for mommy auditory therapy, and hope for a better 2nd month. We meet again with speech in February, so I'm really hoping that he shows some progress by then, or else I will start to worry. Now all I need is a cooperative Lucas who is as excited about learning to listen with his new ear as I am. Bribery Encouragement with prizes is not working. *sigh*

Sunday, January 9, 2011

Happy 2nd Hearing Birthday!

Dear Lucas,

Today we celebrate 2 years since your 1st cochlear implant was activated. You officially have been "hearing" longer than you haven't been. That first year without sound seemed like an eternity, but now the ratio will keep increasing. You will never remember what it was like to be without your "ears".

You have had another great year of hearing. You never cease to amaze us. You want your ear almost from the moment you wake up, until the moment you go to sleep. You would probably even sleep with it on, if I let you. But, your ears need to charge and dry, and you need a break too. I continue to be struck with awe when you can hear me when your back is to me, and when we're driving in the car. You really hear amazingly well with your first ear. I tell people all the time that they have to see it to believe it.

We took you to the John Tracy Clinic this summer, and you loved every moment of it. You're still talking about it six months later. We learned so much to help you on your journey. We won't forget about it anytime soon either.

We made the decision to get you a 2nd cochlear implant in November. At last year's hearing birthday, we were hoping that it would happen, but it was still just a dream. I guess dreams really do come true. I just hope that you will love your new ear like the first some day and that we made a good decision. We felt like it was now or never. In a few years, you should really reap the benefits.

We enjoy every moment of watching you develop language. You are a little sponge, and you pick up on little phrases all the time. You talk as well as, if not better than kids your age. How incredible is that!

You love going to school, and your teachers, Mrs. C & Mrs. K say that you are a joy. You're always aware of where everyone is and what they're doing. They report that you hear well and keep up with the rest of the class. We couldn't be happier.

You're a big boy now. You've graduated from early intervention. I haven't the heart to tell you that Miss J will not be visiting you anymore. Fortunately, we're going to go and see Miss D at Schreiber, so that's just a change of scenery. On Monday you will begin to work with Miss C. I've heard really great things about her, and it will be the start of a new era.

We had a lot of fun celebrating your special day today. Last year was a lot of fun too. We went to church today, and you really enjoyed yourself. Then we had lunch with Daddy's family. Then you decided to take a nap. It's a good thing that you haven't given up those altogether yet, even if you do negotiate them once in a while. When you woke up, we decided to take you to see a movie. That seems to be your favorite thing to do these days. We saw Tangled. Disney certainly does it right. You were engaged the whole time... or maybe it was just the popcorn. You wanted to stay and watch "House" or "Up", as the rest of the world calls it. We had pizza for supper (one of your favorites), and then we celebrated with some cake, of course.

You happily sung "Happy Birthday" to yourself too...

I'm not sure you can top 2010, but we can't wait for the adventure in 2011. All I ask is that you try and adjust to your new ear. I promise it will start to sound normal soon, you just have to be patient. I know... that's tough for a 3-year-old.

We hope you had as much fun as we did commemorating this special day on which you were given the gift of sound through the miracle that is the cochlear implant. We love you. You inspire us. Life would not be the same without you.

All our love,
Mommy & Daddy

Saturday, January 8, 2011

one month

Tomorrow will be one month post-activation for Lucas's 2nd ear. Oh how I wish that I could report that things have been perfect, and that he can hear beautifully, etc., but alas, I cannot. I am a bit... disappointed. There, I said it.

I do realize that it has only been a month, and I know that it will get better with age and time. But, with this CI, I had my expectations set really high. When he was first implanted, we were told to keep our hopes high and our expectations low. That way we couldn't be disappointed. We obliged, but last time he far exceeded our (and everyone else's) expectations. This time, not so much.

Okay... to be fair, he's not doing terribly, just not wonderfully. Clear as mud, right? I mean, at his 1-week post activation mapping, he was testing at 20-25 dB in the booth. That's exactly where we want him to be. So, his implant is working properly, and he has optimal access to sound. But, his brain is still not processing sound in his new ear like the old one. Okay, fine. I don't expect it to be either. But, I do expect to seeing glimpses of what he's processing. We're getting nothing.

But, as much as he's not showing what he's understanding, I really think he is. He just won't let on to it. I believe that he is so incredibly high functioning with the first ear that he simply doesn't like what he hears with the 2nd ear. He totally shuts down, and won't show or do anything with it. He retreats into his own little world, silent, then demands to have his old ear back. The most I can get him to wear his new ear alone is 5 or 10 minutes, max. One time, his amazing AV therapist got him to wear it for an entire hour. Unfortunately, Lucas turned 3 and we're not working with her anymore... sigh.

It hasn't helped that Lucas has been really, really sick since New Year's Eve: coughing, head cold, fever, ear infections, sinus infection. Yesterday he finally started feeling better, but he's still not back to himself. Today alone I think I put his 2nd ear back on 25 different times. He hands it to me and says, "I don't need this." He's still adjusting.

I can now totally understand why people get simultaneous, bilateral implants for their children. It would be so much easier to learn to listen with both ears at the same time. Instead, Lucas has a huge disparity between how he hears with one ear versus the other, and he's too young to understand why. Simultaneous bilaterals weren't an option for us though, so it's not like we made a regrettable decision. We would have gotten him the 2nd CI sooner, but that wasn't an option either. So here we are, doing our best. We continue to be thankful that he has a 2nd CI at all. Some day I know I will be singing the praises of 2 ears... when he's in the elementary school cafeteria, on the playground or when one of his processors breaks. We'll get there... I know we will. I hope to give a better report next month! :)

Sunday, January 2, 2011

goals for 2011

You can call them resolutions, goals, or whatever you want, but one thing's for sure, we make them every year. They often only last a few weeks or months, but it's good practice to set goals, no matter when it is.

Our household is no exception. There's just something about starting a new year with a fresh slate, new perspective, and new found dreams and aspirations. That motivation that lacked in November? It's ever present in January.

So, here goes. I have a list of goals for myself, and a list of goals for Lucas. Making them public will hopefully hold me more accountable, and I think it will be fun to look back next January and see where I stand.

Goals for me:

1. blog 2-3 times a week
2. be a better wife to my husband
3. eat healthier (without meat as much as possible) and take up yoga
4. go to bed and wake up earlier
5. join a church

Goals for Lucas:

1. potty-train
2. adjust to new ear
3. learn to run & jump
4. learn to dress himself
5. learn to ride a bike

What are your goals for 2011?