Lucas's trip with his daddy to CHOP today was welcomingly uneventful. There's no sign of fluid in his left ear, and no indication that his branchial cleft cyst has returned. Dr. K. would like to see him back in a year, unless we have concerns. We are beyond thankful for this news, and that we are able to avoid surgery for our little Lucas.
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 whatit 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.
This is what a Nucleus 5 looks like after it has been used as a key in a keyhole at Grandma's house:
It's a good thing that it was just a ear hook, and not an important part of the processor, like say... the coil, the rechargeable battery, the microphones, or anything else. This accessory could have just popped off, if it weren't held in place with a tiny medal rod because it's a choking hazard, but I certainly would rather have it break than something else. And, I have quite a few extras at home.
Although Lucas takes more to his new ear every day, this is a good illustration of how he still feels about it. He'd rather pretend like it's a key.
Last week at CHOP, Lucas was squirrelly, but still had a pretty good day. We had three appointments in three hours, but we got a good audiogram, he performed decently for speech and we saw his ENT for the first time since surgery. He is hearing with his new ear as well as he is with his old ear. He's not processing sound the same way yet, but he certainly has good access to it. His audi gave him a word recognition test in the sound booth that he typically gives to Kindergartners, and Lucas got something like 87% accuracy with both ears (he had to repeat what he heard), including words that he wasn't very familiar with, like vase. I think it's pretty amazing that the professionals with which he works are willing to give him assessments that are way above his age level, just to see how he does. I'm progressive. I like progressive.
He wasn't breaking any records with speech, but he was doing more than he was last time, and is certainly showing progress. We'll take it. Last night when I was testing his Lings, he was able to identify ahhh, ssss, and eeee correctly, but he was confusing shhh with ssss and switching oooo with mmmm. He can definitely recognize and repeat his name though. That was one of the first things he could do with his first ear too. Again, he's progressing, but still has a ways to go. He works hard with speech therapist every week though with his new ear alone, and we continues to see those glimpses.
Our visit with our ENT has resulted in 2 weeks of antibiotics and another appointment this Wednesday. Lucas has fluid in his newly implanted ear, and we need to see whether it's fluid as a result of having had a cold a few days before our visit, or whether the CSF gusher that occurred during surgery is leaking. The scar from his right branchial cleft cyst removal has also opened up, and we need to see whether the cyst has returned (which is definitely a possibility), or else is just a fluke thing with the incision. Both could result in another surgery, depending on what the surgeon sees on Wednesday.
On a happier note, Lucas really enjoyed the warm weather today. We're so looking forward to spring.
When Lucas entered preschool this year, I was really looking forward to ordering books from Scholastic. At times I've gone a little overboard, but I've enjoyed ordering seasonal books to reinforce the weather, holidays, etc. we are experiencing. In the Fall book pack I ordered, we got a book called The Littlest Owl.
It's the story of the runt of an owl clutch who is last to hatch and may never catch up with his three other siblings. Dumpy, small, and downy white, he is left behind while his siblings learn to fly. No matter how hard he tries, he can't quite do it. "I will," he says. "Just you wait and see!" When a storm threatens the family's willow tree home, he is finally able to fly. It took him some extra time, but he did it. The story describes the owl's daily frustrations like being the last to find a worm. But, we never fear for him, because he never worries himself. The story has beautifully soft illustrations and is written in rhythmic prose. I'd read it to Lucas every night, but he doesn't like it nearly as much as I do.
I like it so much, because it reminds me of him. He is that littlest owl in more ways than one. He was late to walk, late to talk, and he's small for his age (1%). But he perseveres. He learned to talk, despite the odds being stacked against him, and he never stops (no complaints here). He learned to walk at 21 months, and although he's still behind, he makes strides every day. And despite his small size, he certainly makes up for it with his large presence. We put him in a mainstream preschool this year, and he took off and flew, up for the challenge. We may have questioned what his future would bring, with our hopes highs and our expectations low, but he never doubted himself. He always knew he would and he could.
I have a new love for little, white, fluffy owls. I look forward to many more opportunities to watch our little owl fly.
So, I guess I'm not keeping up with all of my New Year's resolutions (namely blogging 2-3 times a week). Some are clashing with others currently. But here I am, and here's a much overdue update. We, like most other parts of the country, have been experiencing some icy, snowy weather. Lucas has had a blast playing in the snow with his daddy and aunties, while I stand around and take pictures. :)
On the ear front, Lucas has been making some progress, I believe. I am learning, however, that he is a master lip reader. I have to be really extra careful that he cannot see my lips when I'm testing his new ear alone, or else he absolutely knows exactly what I'm saying. It's best if his back is completely to me, because I think sometimes he sees my lips with his peripheral vision when he's not looking directly at me. You can tell that he's still just beginning to recognize some words, because he's terribly uncertain. He plays a guessing game when identifying objects, always looking for confirmation because he's just not sure. He's gaining some confidence though, and we continue to see glimpses, despite the 30 times a day (truly not an exaggeration), when he takes his ear off and we threaten him politely ask him to find his ear immediately as soon as possible. I can't wait until he's over that. One time last week, he even made it an entire 20-minute car ride without ripping it apart and throwing it on the floor. I was seriously thrilled.
I just think it's so interesting how well he reads lips, because he absolutely needs NO visual clues with his first ear. He does not rely upon lip reading one tiny little bit with it, but he's still good at it. I figure that because he is still technically missing one of his senses (even if it's certainly being compensated for really well), the other 4 are stronger, especially his sense of vision. I also think back to his entire first year of life without sound. I think he learned to use his eyes to gain information about his world, because his ears were no good to him. Whatever the reason, lip reading is a great skill for him to have for the future, and right now in the bathtub. Except for when he thinks "no pee pee" and "no mommy" are the same thing.
We head back to CHOP on Wednesday for another mapping session, an auditory evaluation and an appointment with his ENT, followed by a well-deserved stop at Baja Fresh. Hopefully he'll show some progress since last month. If not, we'll just keep pressing forward. He might need a little extra time. And that's okay. We'll get there. Still thankful for that first ear.
Lucas was born with profound bilateral sensorineural hearing loss to two hearing parents. He wore hearing aids starting at 3 months, but he got no benefit from them, as we soon found out. He received a cochlear implant in his right ear 3 days after his first birthday. His second ear was implanted 1 month before his third birthday. Cochlear implants have changed Lucas's life immensely. This site was developed to chronicle his life and progress learning to listen and speak!