Friday, December 31, 2010

end of year thoughts

Wow, another year has gone by. Don't we say that every year? We had a very busy 2010 with 3 surgeries, spending July in LA at the John Tracy Clinic, and selling and buying a home. We celebrated Lucas's 1st hearing birthday in early 2010, and he's had a variety of other great experiences throughout the year. He has made great progress, and I came to terms with one very big part of this big hearing journey... Lucas is going to be okay.

I know it sounds silly, because obviously I knew that before now, but I'm not sure I believed it with all of my heart and all of my soul. I do now. Maybe it's the transition from birth-3 to 3-5 with early intervention and the stellar results from his multi-faceted evaluation (more on that later). Maybe it's the anecdotal stories I hear about his success in mainstream preschool. Or maybe it's just his zest for life and his natural, creative way of interacting with everyone he meets. Whatever it is, it no longer feels probable, but rather definitive that he will be a successful, independent part of society. And I feel free emotionally.

In the early days of his diagnosis, it was all about the unknown. We didn't know whether his hearing aids would work... we naively waited for that magical moment. It never came. Then we started from scratch at 12 months. He'd lost over a year of hearing, including his time in the womb. We wondered if he would ever catch up. But, he did and he has, and now we have a glimpse of what his future path will look like. It's bright and hopeful.

It's certainly not time to sit back and assume that his development will progress as normal. We remain vigilant and proactive. There will be bumps in the road. But we have a sense of normalcy, even with the new access to sound that he has with his left ear, and the feeling that we're starting over again. Maybe it's just our sense of normal, but it feels great.

2010 was a year of progress. Lucas made the language and hearing progress that we always dreamed he would, and we made lots of progress in our goal to have his 2nd ear implanted. There were times when I thought we would never get there, ever. But we did, and I'm so glad it's behind us. We only have the future to look forward to, with all of the benefits of having two ears. It can only get better from here.

What will 2011 bring? Many new adventures, I'm certain. Hopefully Lucas will stay out of the operating room, and will fully embrace his new ear. I really hope that I'm able to report next December that he loves his 2nd ear, can't stand to be without it, and can discriminate speech like he can with the 1st one. We've got our work cut out for us, but I'm up for the challenge.

Wishing you much peace, joy and prosperity in 2011.

Tuesday, December 28, 2010

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

Saturday, December 25, 2010

wishing you and yours...

a very, merry Christmas!

"For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." ~ Isaiah 9: 6

Thursday, December 23, 2010


Happy birthday to my little man. I can just feel that *three* is going to be a fantastic age.


the day we brought him home from the hospital


at his 1st birthday party


right after he turned 2

at his 3rd birthday party

Last week when Lucas was standing in the middle of his play room, playing on his horn and singing into his play microphone, I did some reflecting. I started to wonder if we might have a different child without his cochlear implant(s). Would he have the same interests? Would he be as outgoing? Would he be bossy like he is? Would he have the same relationship as he does with his Nanny? I don't know for sure, but I really don't think so. I don't think he would enjoy his shows, or singing and dancing, and he certainly wouldn't be as bossy as he is. His life has been changed. Our lives have been changed. What an amazing journey the past 3 years have been.

At the freshly-turned age of 3, Lucas...

* started asking "why?" repeatedly, today, in addition to "what's that?"
* loves pretend play. Right now his green duck is "angel" and his yellow duck is "baby Jesus."
* likes a variety of toys, including his train table, his little people sets and puzzles
* likes to watch the Mickey Mouse Club
* often responds, "um, no thanks" when you ask him whether he wants something
* negotiates everything he does...
* doesn't like to get dressed in the morning
* loves to play at Gymboree
* likes a variety of food, including sushi, guacamole, and edamame, and especially Daddy's mac & cheese
* wears size 2T pants and 2T shirts
* weighs about 28 lbs
* is not yet potty-trained
* speaks as well as his age-equivalent hearing peers
* loves books, and doesn't like the sames books to be read to him all the time (that's fine with me!)
* recites his numbers 1-20 (sometimes skipping over a few...)
* sings the alphabet (with some parts missing) and recognizes the majority of his letters
* knows his shapes and colors
* still lets Mommy give him 500 kisses a day
* loves to play with his cousins and friends, and asks about them too
* still talks about his teachers and friends from JTC, as if we were just there yesterday...
* remembers everything I tell him right before bed the very next morning
* is my biggest inspiration, the reason I get up every morning, and my little hero


Sunday, December 19, 2010

birthday festivities

I still have a 2-year-old for a few more days, but we celebrated him turning 3 this weekend. Last year it snowed heavily on the day of his party, so we had a birthday brunch instead. We liked it so much that we decided to do it again this year. Everyone in the family was able to attend, and it was a great day!

This picture is Lucas's birthday sentiment in a nutshell. "Happy Birthdaymas". It feels like Christmas, it looks like Christmas, it sounds like Christmas and it smells like Christmas. I guess that's the way it will always feel. It was especially fun to sing to him this year, because he sang along, with his own version: "happy cake to you..."

He asked for a brown cake... so he got one!

getting ready to sing...

family shot

Today Lucas was supposed to have his 3-year pictures taken, but that fell through, so we decided to continue the celebration at the Strasburg Railroad. It was chilly, but so much fun. His reactions to the big trains were absolutely priceless. He got to see Santa, and there were strolling carolers and musicians on the train too. He kept asking where Thomas was though...

pointing at the other big trains

trying to get the window open

getting tickled by Daddy

riding the cranky train

We also visited the Choo Choo Barn to see a huge indoor toy train display. That was quite impressive.

I can't believe he's all but 3. My how the time flies...

Saturday, December 18, 2010

after a week...

The first week post-activation was not particularly easy for Lucas. But I think we're getting somewhere. Maybe it's the fact that he's on program 4 now, or that he has had a week to adjust to new sound, or maybe a combination of both, but we saw a great improvement in his willingness to wear his 2nd CI today. Maybe it's also because today was his birthday party (more on that later), or because all of his favorite people were at our house today, but he didn't even try to take it off and hand it to me.

We're making progress.

On Friday, when his wonderful AVT was here, he even wore his new CI all by itself for an entire hour. That might not sound like a big deal, but it really is. We noticed that he was okay wearing it until we made him listen, and then he would get frustrated. He was responding to sound, but not really speech, but he repeated "ore" when he heard the word "more." I was seriously excited when I heard him say that.

We're looking forward to Tuesday, when Lucas has a new mapping session and 4 more programs to work through.

Tuesday, December 14, 2010

red stop, green go

Lucas is at that age when it's really fun to take him places, and he benefits a lot (in terms of language) from new experiences. Being out in public = lots of curious stares. We're used to it by now, but that doesn't mean it still doesn't get to me from time to time. I haven't handed out any of my Lucas cards lately, but I'm finding my voice more and more when people stare.

Up until last week, people especially noticed his ear when it was dark. Why? Because the Cochlear Freedom blinks red, very red. Please understand that adult cochlear implant users turn this option off (and we will eventually also), but most pediatric users utilize it so that we, the parents, know whether or not the processor is working. But, why did Cochlear choose red? Red means stop, warning, caution... 

I guess we weren't the only ones who thought the red blinking light was a little much, because the N5 doesn't blink red, it blinks green! When I'm not bribing encouraging Lucas to wear his new processor, I'm admiring these new green-blinking processors. Not only are they smaller, thinner, lighter and sleeker, but they no longer blink red. Green is much subtler and more natural. To me it means go and be happy, not stop and stare. 

Other features that I love about the new N5s are the tamper resistant batteries and, of course, the increased water protection. As much as I wish he could have gotten his 2nd implant a while ago, the N5 has certainly been worth the wait.

Sunday, December 12, 2010

lose and find, repeat

Little Lucas had breakfast with Santa on Saturday morning, and thoroughly enjoyed sitting on his lap. When asked what he wants for Christmas, he responded "presents." I guess he will be easy to please.

We are on day 4 of post-activation bliss, and it's going... I would estimate that Lucas is wearing his new ear about 80% of the time. He won't wear it in the car, and it keeps falling off his ear, so that's not helping things. Then, there are the times when we're not looking and he takes it off and hides it. It's good that he's so verbal that he can find it for me when I ask where it is. I found myself telling him several times today, "you have until the count of 5 to find your ear..." We NEVER had this problem with his old ear, because he is so attached to it. He simply cannot stand to be without it. 2nd CI... not so much.

I've asked him what it sounds like, just to see what he might say. He responded, "beep, beep" and "silly." Interesting.

He will let me work with his new ear alone a little bit. When his SLP was here on Friday, he was in quite a silly mood. He wanted to keep turning on this little music box that plays for about 10 seconds then turns off, so we played along and would freeze when the music stops. Then I suggested to him that we try with just his new ear. He played along for a little bit, but kept putting the old ear back on. But, then he initiated the game himself by voluntarily playing with just the new ear. It was great.

Before bed, I've been trying to condition his new ear with the Ling sounds. I will face him without covering my mouth, while he's still wearing both ears. I'll pick a ling, say it with both ears, remove the old one so that he's listening with the new ear alone, and then say it with both ears on again. I'm kind of sandwiching the sounds so that his brain learns to recognize them. I realize it's still premature, because he doesn't have full access to speech with his current settings, but I feel like it's a start.

So, things are still going well, but it's a little bit of a struggle still. We'll get there though, we'll get there.

Thursday, December 9, 2010

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.

Wednesday, December 8, 2010


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!!!!!!!!

Wednesday, December 1, 2010

countdown to...

We are counting down to several things these days... activation on his 2nd CI is 1 week from tomorrow. I'm so excited to begin this new stage of the journey. I'm ready for the challenge.

We are also counting down to Christmas, starting today. I realize I'm not alone in this, but Christmas is my absolute favorite time of the year. From cutting down our tree as a family to decorating our house and tree, I look forward to December every year. Last Saturday we ventured out to pick out the perfect Christmas tree. After a ride in a horse-drawn wagon, we cut it down amidst the snow flurries. So fun!

set up tree...

add lights & an angel...

add ornaments and tinsel...

and it's done!

Lucas also has his own Christmas tree and nativity play set (great language opportunities!) in his playroom. I'm not quite sure who's more excited about the little tree, him or me. :)

Then, last week I got this great idea from one of my favorite money-saving blogs, Saving with Shellie. The idea was to make an advent calendar out of baby/children's socks and place a small gift in each sock to count down the days until Christmas. I found most of my supplies at the Dollar Tree, and some at a local crafts store, and in about 45 minutes, I had this set up:

I used red ribbon, mini clothes pins, various Christmas-themed socks, and little dollar store toys. Each sock has a number sticker on it.

It was so much fun to make, and I can't wait to open a sock with Lucas every day until Christmas. I think it's a great way to make Christmas more tangible for a child his age. It provides many language rich opportunities also. We will count the days, and look at the numbers, and talk about what's on the socks and in the socks.

How do you kick-off the holiday season?