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It’s going to be a big year

 Today marked the first of three surgeries we are planning this year.  It has been over 6 years since our last post.  Lauren has been doing very well since her last surgery.  She has been growing up fast and has been having a normal teenager life.  She is a straight A student and continues to pursue ballet.  She has become a beautiful young woman.  About a year ago, we started discussing surgery again.  Up to this point we have been doing a lot of work to improve Lauren’s jaw and symmetry through orthodontics.  It has been amazing the progress she has made.  We have have been working with Dr. Jeffrey Hammoudeh from California for some time now.  He would like to perform jaw surgery for late 2021.  Over the last couple of years we have noticed Lauren’s hearing has diminished in her affected left ear.  It appears that nerve damage during the atresia repair when she was 4 years old has caused her hearing loss.   The atresia initially improved her hearing but over time it has progressively gotten worse.  Therefore we started looking into aiding her hearing.   We met with a local audiologist.  The fear was nothing could be done because of the damage.  Any auditory aids would not work.  However bone conduction aids seem to really help improve her scoring.  There were many different brands and types but she tended to like the Ponto device.  If we had to do things over again, we probably would not have done atresia repair.  Many families now are opting not to because of the risks involved.

In addition to improving her hearing, we were also concerned that her Medpor ear implant was drifting again. We have had two previous touch up surgeries to fix the drifting.  Since her original implant surgery 11 years ago, Dr. Lewin has developed a new one piece Supor implant over the past few years.  This is a one piece, 3D scanned and printed implant that was taken from her right ear.  This would provide a larger base to prevent drifting and allow for more symmetry of her current ear.   Her ear now with drift has made wearing glasses and a mask during COVID difficult.  After talking with Lauren, this was something she wanted to do.  We decided to schedule this surgery with Dr. Lewin to replace her implant and also get a Ponto hearing device.  As with all surgeries, we had to fight for insurance coverage.  After being denied and filing multiple appeals we got all the codes approved for surgery.  We just don’t know for sure what percentage will be covered til after the surgery. Because of the uncertainty, we decided to just do the Supor surgery with Dr. Lewin and do the Ponto later in the year with a local surgeon.  It would be an additional surgery but coverage would be better in-network.   

Lauren’s surgery today should be about 4 hours.  Dr. Lewin was hopeful not to have to do additional skin grafts.  We plan on spending some time here in California recovering and then having a post-op visit on the 17th.  Along with these surgeries, we discovered Lauren has moderate scoliosis of her spine.  We saw multiple specialists.  The advice was there is nothing that can be done at this time.  She is not a candidate for a brace because her growth has slowed and it is not severe enough for surgery.  We are looking into physical therapy and chiropractic options to prevent it from getting worse.  We were told by the specialists that her scoliosis is not associated with her Goldenhars syndrome.

We know it will be a busy year, but are optimistic for the results.  Lauren is strong and courageous.  As I tell people about her trials, I always say she handles this way better than her parents. 😊