389.1

"389.1; Sensorineural Hearing Loss."  This is the ICD-9 medical code/diagnosis for what my son has.  It sounds so "matter-of-fact,"  plain and simple, cut and dry.  Yeah, right.  If only it were that simple.

I still have no clear idea as to the degree of what my son's hearing loss actually is (yes, I realize that we got our diagnosis of hearing loss two months ago), we've heard "moderate to severe" and "severe to profound" mentioned but we're still not sure and we don't have a copy of his audiogram.  I'm a diligent, protective, get stuff done right now kind of mom, so why don't I have a crystal clear picture of what's going on with my child?  Because deep down I know what's going on with Butters.  I knew even before the last ABR hearing test that my child could not hear; and maybe there's still a little part of me that wants to keep my head high up in the clouds and believe that his hearing loss might not be that bad.  So sue me!

389.1 - I do know that, however.  It still doesn't really change anything or make Butters' condition any clearer either.  I had to find out his official diagnosis due to calling and arranging different appointments at different audi offices and what nots, and I ended up feeling a little deflated that this diagnosis did not give me any more answers.  In fact, it was what it was - a number that answers a lot for medical billers and insurance specialists (another tough job I've had), but doesn't offer a whole lot for a concerned mother.  I still have questions.  Maybe that's why I'm not digging any further to find out exactly why or what is going on with my child - I'll always have questions and I'll always ask the "what ifs."  I haven't investigated any further into the possible causes that could have led to Butters' hearing loss.  Would it be helpful if I knew?  Of course.  Would it change the fact that he can't hear?  No.  And I'm not going to spend a whole lot of extra time trying to find out why he's deaf.  I know there are those out there who would love to argue against me as to why it is important to find out the cause.  That's okay, but that's important to them.  What's important to me is forging ahead and getting the rehabilitation services to help him to succeed.

Despite all of the technology, all of the specialists, all of the official numbers to give to diagnoses, and blah, blah, blah,  I know that there are unknowns.  Techie stuff can't answer everything.  ABR testing tells us a lot about hearing loss, but there are so many vague areas that it cannot measure as to what a baby can/cannot hear - it's primarily measuring brain activity/responses to sound.  All the ABR tests have told me so far (we've had 2, one had too many impedences with the electrodes)  is that Butters' hearing loss is severe to profound.  Is it more on the severe side or more towards the profound?  Too much on the gray area for my tastes.  Please give me black or white. ICD-9 codes can't tell me the degree of hearing loss or what caused the loss. Technology can't go grab me a Kleenex on the days that I still have sob fests because I'm sad for all of the things my son is missing.

It is wonderful that we live in a world where technology can solve many problems and simplify life.  But it's not a cure-all for everything.  I realize Butters may end up in need of a cochlear implant.  From what I've seen and heard they're life changing.  But it's not a cure.  And that's my complaint and rant for the day.  No matter what information I learn, whatever test they administer, no matter what technology in the form of state-of-the art hearing aid or cochlear implant, no matter the numerical explanation, Butters cannot hear - not without much assistance -and that's not ever going to change.  I'm still heartbroken over this and always will be.  I'm still a little bitter.  Maybe I'll get over it.  And I'm still in denial - that comes and goes.  On the plus side, all of those emotions aren't keeping me from working to help  my son to hear and gathering hope instead of gathering more information.