Friday, August 17, 2012

One Year Anniversary From Microtia Repair

We celebrated the one year anniversary of Ben's microtia repair last month (July 18, 2012 to be exact).  I guess it's a good sign that it was nearly a non-event.  I think we mentioned it to Ben that we were celebrating the one-year anniversary and he said something like: "Oh."

Wow - what a difference nine months makes.  For one thing, it's been so long since my last post that I'm not so familiar with how to add and edit posts to this site.  Since last November, a lot has happened, including:
  • Ben completed 1st grade in a Mandarin Immersion program - and he did well academically despite the fact that he's one of the youngest children in the class and has partial hearing loss
  • Ben passed/received the Mandarin "Sprouts" Children's Chinese Certification (it's a bilingual certification test administered by the Taiwanese government
  • Ben resumed swimming lessons this summer, was in the pool nearly every day and is doing the crawl, backstroke, breast stroke and butterfly
  • Went through a season of soccer (during which he had a follow-up atresia repair with Dr. Roberson), a season of baseball and he's in the throes of a summer league in basketball.
  • We returned for a one-year anniversary "check in" with Dr. Lewin who after a brief stint back with Children's Hospital in Los Angeles is now in a private practice (and no longer in practice with Dr. Reinisch).  Dr. Lewin was very happy with the results and impressed by what the NewGel did for his keloids.
  • Endured a minor ear infection from all of the swimming which was addressed through Ciprodex (this link is the exact thing that has been prescribed for my boys every time they have an ear infection).  As a side note, Ciprodex is incredibly expensive - it's this minuscule bottle for about $200 - so if you have a prescription policy that fully covers your meds, you should "stock up" on this medicine for a rainy day...

       
      Microtia Repair (Right) Ear
      
      Non Microtic (Left) Ear
        Went to Dr. Gene Liu (ENT) for a check up and cleaning.  Dr. Liu recommended that we use the over-the-counter "Swim Ear Drops" product after he swims so that he can minimize ear infections due to swimming. 
      • Got several audio tests (including with Dr. Frazer at Pacific Specialists - Eye and Ear and Dr. Roberson's office) where it was determined that Ben is doing fairly well (Dr. Roberson said he was quite pleased) whereby Ben still has some hearing loss, but his hearing in his right ear is much better
      • Received a Cochlear BAHA 3 via Dr. Frazer's office - the new BAHA is a little bigger but works much better than the previous version
      • Consulted with Dr. Roberson about getting Ben fitted for an interior hearing aid, and he indicated that he would advise against it, so long as Ben continues to do well in school.  He said that the fitted hearing aids that go inside the ear canal can create more problems, so if he can hear OK, it's better to leave him alone.
      • Ben continues to sit in the front row in his classes so that he can hear better, but participation in his classes continues to be a challenge.
        Also, after November 2011, while Ben's new ear was developing keloids, we immediately used NewGel on his ear every night.  We purchased the NewGel adhesives as well as the gel in a tube, and in the end, we liked the gel more because it seemed to "stay on" better.  The NewGel (silicone-based) was pretty expensive, but it seemed to work well.  It was cheaper to purchase it through Amazon than to purchase it directly from the NewGel site.  We did that for about four months, including during a trip that Ben took with my husband to Argentina.  Then, we stopped after around March, we stopped.  The results were that the keloids did not get any worse, in fact, one went away completely, and the others diminished substantially such that a stranger wouldn't think there was anything going on there.
          Another important update is that Dr. Roberson is no longer "in network" for the insurance companies that we used in 2011.  Financially, that made a big difference to us.  Without a doubt, we would have used Dr. Roberson regardless of whether we would have had to pay out of pocket.  Dr. Lewin continues to be part of a number of networks, and she also takes MediCal patients, which she does specifically because she wants to be accessible for patients regardless of their economic backgrounds.  She's an amazing surgeon and person as well.
          The upshot is...that after a year + of lots of anguish and surgeries, we think we made the right decisions regarding both the microtia and atresia repair for Ben.  Ben's new ear looks great, allows him to wear his hair short with confidence, and he hardly ever mentions his "little ear" or his "surgery ear" now.  Previously, his ear was always on his mind.  We would go to new places or meet new people, and he would be self-conscious about his ear and his hearing.  Now, his ear rarely comes up.  It has opened our eyes more, though, and we meet other kids on a regular basis who have hearing loss, some of which is from microtia.
          In fact, Ben had several situations recently (new camp, new exchange student living with us, meeting new friends) where his microtia atresia has not come up at all.
          Take a look at Ben's ear - yes - this is the surgically repaired one.  Sometimes we're looking at it and assuming that it's his left (non-microtic) one.  It looks great.