the future

I've been following along on Facebook with the Cochlear Celebration going on this weekend in Orlando, FL. I'm looking forward to taking Lucas to the celebration some year when he can appreciate it a little more, and he's not such a handful.

The thing that struck me most from the pictures, was the teenagers and adults with cochlear implants. I'm used to seeing Lucas and a couple of other kids with CIs, but not teens and adults. It struck me hard that this is our reality. This will always be a part of his life, always. I've certainly come to terms with his deafness and his CIs, but sometimes it's hard for me to digest that THIS IS FOREVER. He will not grow out of this.

As much as I'm okay with him having them now, I'm not yet ready to see teenage Lucas with CIs, and certainly not adult Lucas with CIs. I'll grow accustomed to it, sure, just like when he got his first pair of hearing aids, and both times he got his CIs. I remember the day he got his hearing aids and I was so excited to watch him react to sound (that day never came). I remember the first day he wore his Freedom, and how tough it was to see it on his head. I remember the day he got his N5, and how bothered we were that the magnet is not even on his head with the other one. We hardly notice it anymore, and it even looks strange when he's only wearing one CI. They're a part of him. End of story.

It also got me thinking about what Cochlear's processor will look like 10 years from now when Lucas becomes a teenager, and what it will look like 20 years from now when he enters young adulthood. Just look at how the Cochlear brand processor has morphed over the past 20 years:

I know that the processor will be smaller, sleeker, and more waterproof. Heck, maybe it won't even hang on the ear anymore. Maybe it will just be a small magnet on the head. Whatever it is, I know it will be cutting edge, changing the lives of deaf children and adults all around the world. And really, who cares what it looks like!

I'd like to meet some more teens and adults with CIs so it doesn't seem so distant to me. That's easier said than done, as it was hard enough to find other children in our area, but it will be good for all of us, Lucas included. 

CI activations: then and now

1st CI activation, January 2009

2nd CI activation, December 2010

"When we do the best that we can, we never know what miracle is wrought in our life, or in the life of another." ~ Helen Keller

and then there were two

We had... a GREAT day. I'm exhausted, and am a bit in overload, but we couldn't have asked for a better 2nd activation experience.

We started out early and even went out for breakfast to start our day. Lucas's audiologist was running a little bit late, because he had another activation this morning. We got to see that family as they were leaving, with two sets of grandparents in tow and everything. I engaged them in conversation, because they were excited to see that Lucas had a CI too. When we were in those early stages, I always wanted to talk to people in the waiting area, but others were not always as interested in talking to me. The father asked me how Lucas is doing, and I started crying... you know, that quiet cry that you try to hold in to no avail. All of the emotions of our almost 3 year journey to bringing sound to Lucas rushed to me in that moment, and I was unable to hold it together enough to express to him how well Lucas is doing. Words came out, but were not exactly what I wanted to say. There were really tears of sheer joy and gratitude, and he sensed that, but I wanted to say so much more. I wished them well and they were on their way.

Lucas did really well all day long. He looked a little concerned in the car as we talked about going to the hospital to get his 2nd ear. We assured him that there would be no ouchies, no jammies, and no going to sleep. He then grinned from ear to ear and his body language changed dramatically. Phew. We talked to him about how his new ear might sound silly, and how his old ear would have to be connected to his head, but not on, and how that would be temporary. I guess it worked.

I promise that I dress my child in more than an undershirt when it's 34 degrees outside, but inside this mapping room it was 90 degrees. He really had some great reactions to the new sounds he was hearing. You could tell that he was somewhat unsure, as his eyes would often just move to the side when he heard the beeps. But, other times, he would say "beep, beep". We thought that was really neat. He wasn't so sure about all of the new sounds, but he was definitely a good sport.  Hopefully I'll be able to edit our video footage and post a highlights video this weekend.

He was pretty happy to build this tower...

side view...

rear view...

I love the N5s. There is such a marked difference in size. See for yourself. The side by side view does not look as different as the back view, but there really is a big difference on his head!

I never said I was a hand model... please excuse my very dry hands!

This is the very sleek remote control, that I still must learn how to use!

So, our day went as well as it could have. I felt like a little girl on Christmas morning with all of my excitement. We love the new N5s, but I'm admittedly a tad overwhelmed with figuring out how to work the remote in coordination with both implants. I need to check out the online tutorial this weekend and practice. I think it's a great feature though. 

Lucas did amazingly well today, and took it all in stride. I told him how proud I was of him tonight before he went to bed. I must tell him that pretty often, because the other day I overheard him telling one of his bears, "I'm so proud of you." Priceless!

I will admit, however, that Lucas is not super excited about the new implant. He's tolerating it well, but he expressed several times today, "I don't like it." He always says it calmly though, and there haven't been any tears or tantrums about it. While driving this evening, I removed the new ear because I knew that he would take it off as soon as I shut the car door. We keep telling him that he must wear it so that it stops sounding silly. He happily lets me put it on his ear, and then he runs off to play and forgets about it. I can't ask for much more right now. He must adjust to having sound in this ear for the time, well... ever. I'm looking forward to his ear healing completely too, so that he can go back to wearing wig tape to keep it on his head. For now, we're just using the snugfit, but it's not nearly as effective as the wig tape.

We have four programs to work through until we return in a little over a week for a new mapping session. He definitely has access to sound right now, but it's very quiet, and he's unable to discriminate speech. The goal is for him to get used to wearing the processor and to gradually increase his maps so that he has full access to sound. 

Over the next few weeks, we will try to spend some time each day with his new ear alone. We will start again at step one... sound detection. We will teach him to recognize the presence and absence of sound. Then we will be move up through the 4 levels of auditory development to discrimination (hearing the difference between 2 different sounds), identification (recognizing and labeling sound), and comprehension (understanding the meaning of sound).

I am pumped and ready to work with this new ear! But first, some sleep, and time to let this all sink in. It will take some time to get used to seeing two processors on his head. They will always be there. They will never go away. Sometimes, even on the best of days, it's hard to really digest that reality. But then, he will walk into the room and say the most magnificent sentence in the clearest, sweetest little voice, and it makes it all worth it.

Our baby is a BILATERAL bionic boy. Happy hearing birthday to your new ear, little Lucas.

nervous

Tomorrow's the big day! Lucas's 2nd CI will be activated. My emotions are just about everywhere... I'm nervous, anxious, thrilled, elated, excited, worried, relieved. I feel like we've been waiting so long for this day. I still remember his first activation day, and asking his surgeon when we could schedule the 2nd surgery. He told us no time soon. I was crushed, seriously crushed. I never gave up hope though, and here we are, 1 month short of 2 years later, and Lucas is about to get bilateral access to sound. I can't wait to see how the 2nd CI enhances his hearing abilities. can.not.wait.

I believe that he hears with his current ear as well as he can absolutely, possibly hear. It is utterly amazing to see what he can hear, what he can understand and what he can discriminate with that one bionic ear. I'll say it once, and I'll say it again - I never in a million years thought that he would hear this well. Never ever. You really have to see it to believe it. It's indescribable.

In so many ways, I'm worried that he will have a difficult adjustment period to his new ear. He will not be able to hear well with it tomorrow. We are seriously starting from scratch. It will be beeps and buzzes. I've been told that it will take less time for his brain to make sense of this new electronic sound than the first one did, but it will still be an adjustment. 

I'm totally up for the challenge though. In some ways I miss the fervor with which I approached teaching him to listen the first time around. I lived it and breathed it for so long, and then it clicked. We've just kind of been coasting along lately, because he's doing so well. No complaints. I'm ready to pull some old tricks out of my sleeves and get to work though. But, I need a cooperative almost 3-year-old with which to work. When we were at CHOP in October, Lucas would not let the audiologist map him. He could not stand for the magnet to be on his head and not be turned on, even when I explained to him what was happening. There will be a lot of that tomorrow. I've been told that 3 is a magic age though, so we'll just wait and see, and hope for a good day. 

What can I bribe with with? I know... Baja Fresh. Wait, that's for me!!!!!!!!

a good decision

When we met with the surgeon Monday morning, he asked us whether we wanted Lucas to be implanted with the N5 (sticking with the same company as the old ear), or whether we wanted an AB (different company) implant in his left. We joked about it for a few minutes, thinking that it would be silly to have two different devices, but he told us that some people seriously do have one ear from each company.

I thought about it for a moment (and really just a moment), thinking about the possibilities of having the benefits of both devices. Advanced Bionics implants are advertised as giving increased musical benefit to recipients, which I see as a big drawing point. We originally chose Cochlear, mostly because of the versatility of the babyworn processor to go easily between being clipped to the body and being worn completely behind the ear. We've been pleased with our decision, but I'm sure we would have been happy the other way around too.

On Monday, we decided to stick with status quo, as I've been dreaming of the Nucleus 5 device ever since it was released. I also am a big fan of symmetry. Having 2 different external processors brings more attention to his ears, in my opinion.

Well, I believe we made a good decision. The day after Lucas's surgery, AB voluntarily recalled their HiRes 90K implant, and retrieved all unimplanted devices in distribution. We would have missed the recall by a day.  Apparently there have been 2 reports of recipients experiencing severe pain, overly loud sounds and/or shocking sensations at 8-10 days after initial activation. You can read the press release here. This may have caused Lucas to be explanted. I'm not sure what they would have recommended, but I'm very thankful that I don't have to deal with another element of stress in this whole process.

I've heard many, many good things about this company, and I sincerely hope that the problem gets solved soon, for both the company and the recipients.

second time around

Yesterday morning started very early, just like we like Lucas' surgeries to start. We left our home at 4:30 for a 6 AM arrival time. By 8:10, Lucas was being taken back to the operating room. It was 4 hours... 4 long hours before we would see him again. Nate and I decided to go to the cafeteria and grab some breakfast, because we knew it would be a long morning.

We returned to the waiting room before 9 AM, just in time for our first nurse update. During the second update we got, she reminded us that she wouldn't be entering the OR from that point on because of the ear being exposed, and the risk of germs. She got a thumbs up from the surgeon though, so we took that as good news. At around 10:30 AM, we spoke with the audiologist who tested the implant. He reported that it was working great and the surgeon was just closing up. We got some relief from that news. Around 11 AM we saw the surgeon. He said that surgery went as expected - he was able to get a full electrode insertion, but he also hit a CSF gusher, just like last time. He was not surprised by it. Luckily, he was able to manage and control it quickly, so it shouldn't be a problem.

After we spoke with the surgeon, he told us that they were taking an x-ray (to make sure the implant was placed properly), and then they were going to do the heart echo. Yes, another heart echo. Because of Lucas's heart condition, he has a heart echo every 6 months. He had one in June, during his trigger thumbs surgery, so I decided to call his cardiologist and inquire as to whether he wanted to do another echo under sedation. He decided it was a good idea, so we scheduled another "two-fer". Hopefully we'll get a good report.

We got to see Lucas around noon, and he was discharged at 1:00. We were surprised that Lucas's head was not wrapped, like it was last time. They wanted him to be able to wear his processor, so they didn't wrap it. I was concerned that his incision was exposed and that he would pick at it, but so far, so good. It is well sealed with Dermabond.

Lucas never really woke up before we left, and he slept the whole way home. The nurse said he only needed to be "wakeable", which he was. She kind of rushed us out of there. We were worried that he would throw up on the way home, but he saved that until he got home, but certainly made up for it. The anesthesiologist gave him "double" anti-nausea medication, but it definitely wore off by the afternoon. Lucas slept on and off the entire afternoon/evening, only being awake for about 10 minutes at a time... long enough to beg for juice and crackers, throw it back up, and go back to sleep.

The discharge instructions said to call the ENT resident if Lucas threw up 3 or more times at home, so I did. She was very nice, and called in an anti-nausea medication to our local pharmacy. We couldn't give Lucas his pain medication or antibiotic if he was just going to throw it back up! CVS told us it would be an hour before the prescription would be ready, so I gave them my "sob" story, and they had it ready in 20 minutes. I'm glad I spoke up. We gave him the med, but didn't wait long enough to give him food/drink/medicine, so he threw it up anyway. But, that was the last time (7:30 PM) he has thrown up, and he ate pretty well today.

He actually slept through the night, but with me sleeping next to him, and both of us on the floor of his bedroom. I set up a little bed area for me, and he wouldn't leave my side, so that's how we slept. He woke up at 6:45 AM, and went strong all day, playing, walking and running. I have not noticed any increased balance issues or dizziness, so we're really grateful for that. I'm very happy to report that Lucas is pretty well back to normal.

Yesterday we really felt the effects of major surgery, but today you would barely know it. Other than the fact that Lucas would not take a nap today, even after 2 consecutive car rides during which he fell asleep, he had a great day. He expressed to me that his ear hurt when he woke up this morning. I was surprised that he was able to express that to me so well, but also very thankful.

Yesterday was no walk in the park. My stress and anxiety were really high. I couldn't concentrate on anything for more than 3 minutes at a time. I spent a lot of time pacing, and updating my Facebook status on Nate's iPhone, which is time consuming because it's not my phone. Several day surgery staff told us that we looked familiar. You know you're there too often when... This surgery was just different than the other surgeries though. We knew what we were in for, we knew what we were up against, and we knew what we had to lose. So far, the outcome has been as good as we could have asked for, minus the gusher. We are unbelievably thankful for that, and attribute it greatly to all of our wonderful local family/friends and our worldwide CI friends, who were praying for and thinking of our little Lucas. With 5 surgeries, 2 sedated MRIs and 3 hospitalizations in less than 3 short years, we're hoping this is our last major procedure for a long time.

Lucas's incision site looks great right now, and I believe it will heal quickly. The N5 implant is remarkably less noticeable on his head than the Freedom. I can barely feel it! The Freedom protrudes. The N5 looks much for comfortable. But what do I know.

Now the countdown begins! Activation is scheduled for December 9! At that time, he will get 2 N5 processors (one intended for back-up), but he'll wear them on each ear! He'll then have the Freedoms as back-ups. He'll be hearing with 2 ears before his 3rd birthday and before Christmas! YAY!

Lucas is getting...

* A SECOND COCHLEAR IMPLANT!!! *

Barring any insurance problems, Lucas will be bilaterally implanted with a Cochlear N5 implant in his left ear on November 22, 2010. Surgery will be at CHOP with with the same surgeon who did the first surgery. We are excited, nervous, anxious and just so incredibly thrilled to give him surround sound! More details to follow, but we just wanted to share our very exciting news!

speech sample

When we were at the John Tracy Clinic this summer, we had the opportunity to look at Lucas's language skills with more depth. I had stopped keeping track of all of his words, because there were too many to count. But, with the help of one of their vocabulary books, we counted how many receptive and expressive words Lucas has. We came up with close to 500 expressive words, and 900 receptive words.

At a chronological age of 2 years 8 months, and a hearing age of 1 year 8 months, here is a speech sample of Lucas. I just love the Bill Martin / Eric Carle bear books (brown bear, polar bear, panda bear), but I especially love Brown Bear, Brown Bear, What Do You See?, for its simple animals and colors. When I read this to him, I pause to let him fill in the blanks, then I let him read the entire last page. I think it's great that the books are always summarized on the last page.  He just belts it out, so I decided I needed to get it on video.

I just love his sweet little voice, and his intonation and enthusiasm for what he's saying. It's not exactly a random language sample, because he's just making a running list of images he sees. But, I think it gives a good glimpse at how well he speaks. I think it's so cute that he adds "y" to most of the animals (ducky, froggy, etc.). I'm not quite sure why he says "black fish" instead of "black sheep", but "sheep" is actually the first word he says on the video. There are still a few articulation substitutions that he makes (doddy, instead of doggy), but he's not even 3 yet, so we're just going to wait for some of the later sounds to emerge. You can also see him sporting his new blue and white hearing aid mold (just in time for Penn State football season). It fits so beautifully and doesn't give feedback at all now. We will continue to encourage him to wear it, to stimulate that auditory nerve and see what it can do for him!

We are incredibly, incredibly proud of him and how far he's come. We never dreamed in a thousand years that he would talk this well, this soon, or even ever. To say that we are eternally grateful for this life-changing technology is a huge understatement. I still marvel every single day.

a matter of semantics

I did not take this one, for the record...

In the past when people have asked me what's on Lucas's ear, I usually would tell them that it's a cochlear implant and that it helps him to hear. I also typically use the word help with children, because it makes the most sense to them.

I've been thinking about it lately, and I don't believe that the word help does the cochlear implant nor profound hearing loss much justice. The cochlear implant doesn't just help Lucas to hear, it allows him to hear. Without it, he hears nothing. Period. There's no helping involved. Helping is like being half-way done and someone lending you a hand. Hearing with a cochlear implant is like going from zero to 95 with the attachment of a magnet. It's pure allowance.


So, today when the cashier at the coffee shop told Lucas she liked the flashy thing on his ear, then proceeded to ask me what it is, I told her it's a cochlear implant, which allows him to hear. She then asked me if he can hear without it. Nope. Then she asked me if he was deaf from birth, and commented on how amazing technology is these days (INDEED). She thanked me for sharing (which was nice). Conversation over and mission accomplished.


I guess it was a matter of semantics.

the last days of summer...

We're soaking up the last few days of summer, and trying to fit in some last minute activities before we start the school year. On Friday, we visited the Please Touch Museum in Philadelphia, which was pretty phenomenal. Lucas thoroughly enjoyed himself, as did Oma and I. I scored a great deal on Living Social (daily deals @ up to 90% off) for tickets to the museum, and am so glad I did. Here are some pictures from our day!

Yesterday we joined our friends and visited Lake Tobias Wildlife Park. When we visited last year, Lucas wasn't even walking yet. Time has really flown! The highlight again this year was definitely the safari tour, but Lucas enjoyed all the animals. We saw lions, tigers, bears, monkeys galore, zebras, ostriches, alligators, capybaras, wallabies, prairie dogs, emus, llamas, and more! Check this place out if you're ever in Central PA!

we tried to warn him...

the talk

I guess it's more like an ongoing conversation of sorts, than "the talk". And no, I'm not talking about the birds and the bees. I'm referring to his ear. With every passing day, Lucas enters further and further into toddlerhood and heightened awareness of his surroundings. It's the right time to begin talking to him, however simply, about his cochlear implant.

It's no longer that Lucas wakes up and I put it on his head, like when he was first implanted. I ask him if he wants it first, and usually he asks for it first anyway. He gets that he can't access his world without it. He understands the difference between when he is and isn't wearing his CI. Whether he understands that as "hearing" or not, I'm not sure.

I want him to develop language to talk about his CI, and a basic understanding of what it is. When I'm wearing my glasses, I will often say "Mommy needs her glasses to see, just like you need your CI to hear." He understands his CI receptively as his "ear". When we're at the playground, we ask for him to hand us "his ear" right before he goes down the slide. He always willingly obliges. Recently though, I've taught him to say "CI". He hasn't used it spontaneously yet, but it will come. I decided "cochlear implant" is too long and technical right now (and he won't be able to pronounce it well anyway). I also decided that "ear", while cute and appropriate within our family, is not the right expressive word for him either. "CI" it will be, until he chooses another way of describing it for himself.

Speaking of spontaneous, Nate and I heard Lucas say "thank you" today, UNPROMPTED. I realize this is just a natural toddler milestone, but we're always extra excited when he reaches them. It made me think of this blogpost over at Hopeful Parents (great website, by the way). Not that I have any common experiences with this mother, but more that she got me thinking about how we constantly prompt as parents, and then they finally get it on their own. Saying "thank you" hasn't been a point of frustration for us or anything, but it's exciting that he produced it on his own.

How do you talk to your young toddler about his/her cochlear implant/hearing loss? What kinds of words do you use to describe it? I dread the day when Lucas asks me why no one else around him has a CI, or starts a conversation like this. Those are the days that I'm thankful that we do know a few kids locally around Lucas's age who have cochlear implants. I hope that his friend, Jack, and he will grow up to be good buddies. The first time that Jack had his cochlear implant and saw that Lucas has one too, he got really excited and signed "same". It made me cry.

Until then... his "CI" it will be. And I will continue to affirm that he is my special little boy with a special ear to help him hear. Oh yeah, and I'm still meeting that 500-a-day kiss quota.

Would you believe?

On New Year's Eve, one of Lucas's processors just stopped working. I was wondering why he kept trying to adjust it, and then I noticed that the light had stopped blinking. I tried to trouble shoot in various ways, but I had no success getting it to turn on again. Luckily, he has a back-up processor, so it wasn't really that big of a deal.

So, I called Cochlear today, since today is the first business day since it stopped working. Last time I called (over the summer), they found his name in a jiffy. Tonight the rep kept asking me further questions, like which implant center he uses. She then explained that there is someone else with the same name in our state! Who would have imagined! I mean, there are only 188,000 cochlear implants in the world. But someone very close to home shares the same first and last name as Lucas AND also has a Cochlear brand cochlear implant. Somehow I think that's pretty unbelievable.

I guess I didn't do a good enough job of giving him a less common name... hehehe! Wouldn't it be fun for Lucas to meet this person someday?

attached to his ear

Lucas is attached to his ear... both literally and figuratively! It has really become obvious in the past few weeks how much his CI has become a part of him. When he wakes up in the morning, he asks for it by making the sign. If the whole processor comes off, he brings it to me to put back on. If the coil comes off, he will even try to put it back on himself. It's an understatement to say that I'm ecstatic that he has embraced it and not rejected it.

Sometimes when he doesn't want to go to bed, he insists on keeping it on. So much so, that I'm afraid he's going to poke a hole in his head while signing "CI". Most of the time though, he hands it right over, as it's an integral part of his bedtime routine. When I ask for his "ear" before nap time, bath time or swim time, he happily hands it over. But, when we were at his cousin's house a few weeks ago, he was not too keen on the idea of giving it to me before going down a slide. I can't blame him, but he will have to learn in time.

He leaves it pretty well alone in the car these days, unless the coil gets knocked off, then he just pulls the whole thing off and gently puts it into the cup holder in his car seat until we reach our destination. Once in a while, he pulls it off if he's really mad. I've been told that that will only get worse...

It's such a part of him now. It's as routine as putting on his shoes, only so much more magical. I really hope it stays that way. Here he is, asking for his processor. Right after that, he got giddy with excitement as I put it on. PRICELESS.