Friday, May 7, 2010

Seth CI Update

I thought in honor of Seth's big one year hearing anniversary I would post a little bit about the progress he's made.

This year Seth has made amazing progress and had frustrating setbacks. We have gone one step forward and two steps back more times than I can count. I decided a while ago that I wouldn't sugar coat this experience...that while Seth has been giving an amazing gift, I would be doing everyone who is interested in or considering implants a disservice by only posting the glowing reviews. And yet...mostly, it is a glowing review. I mean, my son can hear.

Within three months of activation, Seth had "caught up" to his hearing peers and showed now language delay. Of course, that was at age one, when hearing babies aren't saying much and definitely aren't in speech therapy every week, so Seth was kind of at an advantage. Everyone was astounded at how well he heard and verbalized. As we round the corner to two, he has fallen behind in some areas, namely expressive language, but is noticeably ahead in some other areas like receptive language. The kid understands complex directions and will carry them out to a tee. He's capable of saying many words and phrases, meaning I or his speech therapist have heard him say them clearly, but usually chooses to observe and speak only when it's his own idea. He is incredibly strong willed. Within the last month, though, I have seen a big improvement in willingness to imitate and hold a conversation. The main reason I don't really stress about his expressive language is that his booth tests are showing us that he hears very well, as is his behavior. The talking will come.

The hardest thing to get used to was keeping his CI's on every single second. When he was a baby, it was easy, and then, around his birthday, it began to get much harder. He pulled them off. He threw them. He carefully dismantled them into their smallest pieces and threw them every which way. We've lost batteries and ear hooks out the window of the van more times than I can count. For a while he was ruining cables on a weekly basis. Our friends at Advanced Bionics joked about having Seth act as a quality tester because he was so adept at breaking things.

But then, this winter, or maybe even more recently, I can't really remember; he realized that keeping his CI's on meant he could hear. We turned a corner. Now I can count on him to keep his ears on for long periods of time. He'll bring them to me if they come off. It's getting better. He even tries to put the magnets back on himself if they fall off. He wakes up in the morning and pats his head excitedly, waiting for his ears.

Here is a list of Seth's words and phrases at 22 months, 12 months post cochlear implant activation.

  1. Show
  2. Cross
  3. At Table
  4. Cup
  5. Ball
  6. Mama
  7. Baby
  8. Help
  9. Up
  10. Down
  11. Milk
  12. More 
  13. I put
  14. Blue
  15. Boy
  16. Blocks
  17. Bear
  18. Cut
  19. I Cut
  20. Round and Round
  21. Mine
  22. Hug
  23. Thank You
  24. Okay
  25. Uh Huh
  26. Yeah
  27. Bag
  28. I do
  29. Toot Toot
  30. Out 
  31. In
  32. Went
  33. Under
  34. Hi
  35. Bye Bye
  36. Horse
  37. Cow
  38. Quack
  39. Moo
  40. Arf Arf
  41. Apple
There could be a few more than that, but that's the list that was in my phone and is generally where he's at. One and two word phrases. He also does a lot of babbling total nonsense that clearly is supposed to mean something, I just haven't figured out what it is yet. 

I am, without reservation, thrilled that we implanted Seth as early as we did and especially that we implanted him bilaterally. He localizes sound effortlessly and I can tell a major difference when he only has one ear on versus two. His therapist also says she sees a big difference in localization between unilateral kids and bilateral kids. It's a very, very big advantage. He seems to hear very naturally. He loves music and dancing, and he can really bust a move. 

At the same time, he's a kid, and a stubborn one at that. I think a lot of his refusal to vocalize when asked is more about being a toddler and trying to gain some control than about his CI's, but I am really, really hoping for a language explosion soon while still reminding myself that he's a kid and he's going to do things in his own time. It can get so easy to get caught up in quantifying his progress when it's really about his quality of life, which is very high. 

And last but not least, so you guys can actually see a casual therapy play session in action, I have a video for you. And let me tell you, I am going to have to post the outtakes sometime soon, because they are ridiculous. But here is about five minutes of different types of listening activities we do with Seth. Plus he's just a cute kid, and I know it's been too long since I've posted him in action! He's come a long way, and I hope you enjoy seeing what you guys helped us accomplish so far!

(For whatever reason, part of the picture is cut off of the video when watching the embedded version. If you click through to You Tube you see the whole thing.)

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