Friday, March 25, 2011

looking better

Lucas's ear looks really good right now, except for that little spot. We did not see Lucas's ENT or anyone else from the office on Tuesday, and I was okay with that. We will follow up in a few weeks.

As for his other appointments at CHOP... well, Lucas was very 3. He was pretty cooperative, but rather distracted in the booth, and he was only testing at 35-45 dB with his new ear. Mapping was another issue. He was not happy with having his ears attached and not turned on, and just wearing the new ear alone to be mapped. He still has the same program for his old ear as he's had for at about 6 months now, but he has a new map for his left ear, to give him some more access to quieter sounds. Somehow we managed that.

Then we were off for his hearing evaluation with speech (to measure his progress with his new ear). Surprisingly (because of how he acted for audio), he performed pretty well. She was well planned and quick with her activities. He's able to process more right now than he did at 2 months post-activation, so we're happy to see progress. He had a little trouble with single-syllable words with either the same first or last sound. Those discriminations are still emerging. We concluded that he just needs to gain more confidence, and we should see lots more progress at 6 months post-activation in June.

For now, we'll continue to practice with his new ear alone. Tonight we were playing hearing games, and he asked me to take my old ear off... so I played along and pretended to hand it to him. He proceeded to cover his mouth and ask me to pick up the zebra. It was super cute. He gets it, in his own 3-year-old way.

Now we just wait for his ear to heal and to meet with his surgeon again. Still praying for no surgery!

Monday, March 21, 2011

how cool is that?

I called CHOP first thing this morning, as promised. I spoke with a nurse and she said she would get a message to Dr. K, and either she or he would call me back. I was so happy to talk to Dr. K personally this evening, and the first thing he said to me was, "I'm looking at the picture of Lucas's ear on your blog post right now, and I can see that..."

How cool is that?

He was able to "diagnose" over the phone because of my blog post! He changed Lucas's antibiotic dosage slightly, and gave me some further instructions. He wants to see Lucas in 3 weeks, and then we'll decide what to do from there. He said that it's "very likely" that the cyst has returned, and it may need to be removed again. Ugh.

The site actually looks better than it did yesterday. The swelling has really decreased, and you can see a little hole now too.

If timing is right tomorrow, we may see Dr. K. Or maybe he'll just look at this image again. :)

Sunday, March 20, 2011

weekend of ear woes...

Happy Spring!

It has been a weekend of unprecedented ear woes. We have generally had very good luck on the ear front, both bionic and biological. I guess aside from the need for cochlear implants, the CSF gushers, the branchial cleft cysts, and the tubes... okay, wait. I guess everything is relative. I just mean that Lucas does not have recurring ear infections, etc. and that we rarely lose or break any of his equipment.

Except this weekend.

Friday night for the first time, we spent time on a CI scavenger hunt. It was short lived, but it was really the first time that we've been worried about finding the elusive 2nd CI. It was in the living room the whole time, but Lucas insisted that he dropped it off the deck. Boy did I breathe a sigh of relief upon finding it.

Then on Saturday, just when I was thinking about blogging about how well Lucas has been doing with wearing both ears in the car, we arrived home from his doctor's appointment (more about that later), and he had taken the new one off and pulled it apart. When I put it back together, it would blink normally, but then when I put it on his head it was a solid orange. Not good. I asked Lucas where it had been, and he pointed to his nose. Lovely. We put it in the dry and store for a few hours during his nap, and that seemed to do the trick, but it was working sporadically again today. Great. We'll see how it acts this week. Good thing we're going to CHOP on Tuesday, because I can get their opinion about which part is damaged, if it's still giving us trouble.

Back to the doctor reference. Friday afternoon I noticed that his right ear was swollen, right on the same site as the branchial cleft cyst removal incision, just like last month. On Saturday morning, it was worse. Since I don't like to mess around with anything related to his ear, we went to see his pediatrician. The doctor agreed that there's some kind of infection in there, and prescribed him more antibiotics. I can't say that I'm a fan of antibiotics every few weeks, but my opinion has changed since having a child with significant medical concerns. There's no messing around. I'll be calling the ENT early tomorrow morning to beg request to be seen by someone while we're at the hospital on Tuesday.

I removed the ear hook from his right ear, and am solely relying on wig tape to keep the processor on his ear. It's working just fine. When I put Lucas to bed tonight, I noticed a pin size hole forming on the incision, so I put some antibiotic ointment on it. It's pretty tender, and he doesn't like me touching it. This has happened now twice in 2 months. Either the branchial cleft cyst is back, or something is wrong with the surgical site almost 5 months post-surgery. 

It certainly could be worse... we could have actually lost his CI, or it could be completely not working. We really have lucked out with our equipment so far. And Cochlear's customer service is really spectacular. I just had his coil and magnet replaced on his new ear this week, because the magnet got stuck somehow and I couldn't twist it anymore. It was replaced in 24 hours. 

I'm just hoping that whatever is going on with Lucas's ear doesn't result in another surgery. Pretty please?

Tuesday, March 15, 2011

Ten on Tuesday

I've been enjoying reading other "Ten on Tuesday" blog posts over the last several weeks, and I decided it was my turn.

1. I should be working on my "Everything Google in the Classroom" course right now instead of writing this post. It will have to wait.

2. Lucas is adjusting to daylight savings time. It's been easier than it years past. As much as I enjoy that it stays light longer, I don't enjoy waking Lucas up during the week when it's still dark.

3. I've had enough teacher and teacher union bashing in the news to last me an entire lifetime. Enough said.

4. Lucas insists on being called a "big boy". I keep reminding him that he must start using the potty willingly to officially be called a big boy. Reverse psychology is not working. He's not interested.

5. I am so ready for spring! I want to play outside with my boy and spend lots of time at the park!

6. Lucas continues to make progress with his new ear. Tonight before his bath I noticed that he took the old ear off first and just had the new one on for a bit, willingly & unprompted.

7. Speaking of two ears, it looks really strange to me to see Lucas wearing only one CI. I remember how strange it was to see him with 2 CIs for the very first time. It's amazing how perspectives can change in 3 months.

8. Tonight I got my first phone call to act as a mentor through Parent to Parent of PA. There's a newly diagnosed family in my area that is looking for support. I spoke with the mom for about a half an hour this evening. I am so happy to serve new families in this way!

9. I rarely write a blog post without interruption or distraction. It often takes me 1-2 hours, because I stop and do other things. Tonight is no exception. I'm finished with my weekly work for my grad course. I guess Ten on Tuesday was the one doing the waiting tonight.

10. I'm looking forward to taking Lucas to PT and speech therapy tomorrow evening. One of these days I'll finally blog about our IEP process and Lucas's current services. He continues to work with an amazing team, and we couldn't be happier with his services right now! Okay... unless we were still working with Miss J...

Wednesday, March 9, 2011

3 months out

Three months ago today, Lucas began the second part of his hearing journey... he began hearing with his second ear. It has not been an easy or quick adjustment, but Lucas is making good progress.

He still has not fully embraced the ear. If I forget to take it off when we get in the car, it inevitably ends up pulled apart and strewn around the car (just like his shoes). I like to avoid that at all costs, since I typically don't have an extra 10 minutes to play CI sleuth and risk not finding a piece.

He's still hesitant to wear his new ear alone. Even with a lot of bribery, he really resists any mention of wearing the new ear alone. He will wear it alone for his speech therapist though, so I'm thankful for that time every week. Tonight at speech therapy made it all worth it, to be able to watch him successfully listen with his new ear through the two-way mirror. She played a listening game with Mr. Potato Head. She would say the targeted body part and when he would choose correctly, he could put the piece on. When he stopped chattering long enough to listen, he got them all right! She also read a new book with him, and he was able to answer some of her questions, like "what is he doing?". I was impressed that she was even able to teach him (and have him repeat) new words with his new ear alone. He repeated "pinwheel" and one other word that I can't remember. I was very impressed!

He's definitely understanding, but he's still lacking confidence. I believe that his old ear sounds so great, so crisp, so normal to him, and the new ear is just okay. Maybe it's still a little fuzzy, or still has that robotic sound that we've all heard about. Although I have absolutely no idea what it sounds like to him, and he, of course, is unable to express what it sounds like to us, here is an example of what I perceive the progression over the last 3 months to loosely resemble. This example demonstrates how the sound quality changes with an increase in the number of channels, and has nothing to do with adjustment over time. Nonetheless, I think Lucas is still hearing (with his new ear) like the 3rd or 4th best repetition of that sentence... he can hear it and understand it, but it still sounds fuzzy and a little strange.

But, he's getting there, and it gets better every day. We don't go back to CHOP for his 3-month follow-up for another few weeks. I wonder what he will be doing in 3 more months? Continuing to exceed my expectations, I'm certain.