November 13, 2012

7 months out but learning that even with surgery you still have to deal with the microtia/atresia

Trey is 7 month post his last surgery.  The ear looks amazing.  I am just amazed to how wonderful it looks.  Trey doesn't get asked about his ear but usually if he does it is because his friends notice he doesn't have a hole in that ear. We have had some tough conversations about his ear and he has cried about it.  Breaks my heart.  I want him to love every part about it and know it is okay to be different.  He just doesn't like to be singled out so it bothers him when someone notices his ear is different.  We have always told him he is loved and his ear is special and I try to tell him how cool it is to have something different.  Some kids deal with this so well and for others it is hard.  Knowing what we knew about him at a young age we do think having surgery at 3 was the right call.  Without the surgery he would not be able to escape the questions of his peers when he just wants to play and be like his peers.   I try hard to not think about his ear and I don't want him to be singled out for being different, he just doesn't like it.  But I have learned that I as his parent and advocate will always have to deal with the hearing part. Lately  I have noticed more and more he hears things incorrectly.  He says words that I think he is making up and realize it is that he didn't understand what the word is when spoken or song.  He has had the issue of school friends whispering into his ear and he just doesn't know so they think he ignores them.  Or coaches wondering why he just doesn't do what they want him to do.  Trey would love to have a BAHA but we can't afford one on a softband since it is not covered by insurance.  He does not want surgery so we have decided to not implant a BAHA at this time until he is ready for it.  I think he doesn't like the idea of the BAHA being permanent.  So now I have to make sure we always tell coaches, teachers and anyone else that has to provide him instructions that he can not hear on his left side.  I am learning to be upfront about his hearing it is just I don't think about it as much so I do forget but we do keep an eye on things and watch out for signs that he isn't hearing instructions.  Biggest problem when having a child with a hearing loss is that they don't know when they don't hear something.  I have to be the one to see if he heard me.  Of course he does play that up at times but it is obvious when he is just selectively listening like all kids.  So time will tell what happens with the BAHA.  Right now I am hoping to work with some other parents and advocates about getting hearing aids to be covered by insurance in our state.  I just want anyone who wants to hear to be able to get the power to hear.  It is important and I can't believe it is not covered.