Good Morning....
~~My mind is in so many different places these days, and finally when I thought we were starting to cope, I feel as though I was hit by a semi truck. The carpet was ripped from under neath us...every hope that i had is now gone....
We came back here to Great falls to do the H.I.N.T test (not sure i can even begin to tell you what i think it is cause what i thought it was has proven to not be it) I know that doesn't make much sense...Aubrey this time did AWESOME on the test...now that does NOT mean that she is hearing normal..it has to do with speech and how well she can discriminate...How she is processing what goes in and how well the hearing aid is doing its job...Really I am new at this...we wasted 11 years with a audiologist in Missoula who couldn't even teach me how to read her audio grams....so the lingo is still new to me:) Anyhow...since she did well on her H.I.N.T test this time they said well "maybe we should go back to the idea of the better hearing aid"
DON'T get me wrong, I had just started to give the cochlear implant thought, and I was starting to learn and i was starting to accept~~~now the rollercoaster has gone on another turn. Aubrey and Madie both have E.V.A.S (enlarged vestibular aqueduct syndrome) and hearing comes and goes things are ALWAYS changing, just when you think you have something under control....ha you get hit in the head with a ball and ALL the hearing is gone. Will it come back and when will it come back....that is the sad part of this syndrome...no one has answers. We wait and we see....it is so FRUSTRATING.
I truly understand we are in a great place for my family, BUT I do feel that it is in my girls best interest for others to look and learn what we are dealing with...other professionals. Do I feel guilty, yes...to some degree, but we are all on the same page and want the best for Aubrey and Madeline!
I got a packet of information from Seattle..they have a hearing clinic there and Aubrey had her first ABR ( auditory brain response) test there at 18 months old...I saw what they had, I trust Seattle knowing that Aubrey had her heart surgery there...and it is a bigger city then Missoula and they have WAY MORE to offer! so I fill out the load of papers and i send it back along with her audio grams and some other needed information. I want someone to look at what she has and tell us what direction to go in...once we are told to do this then well maybe that isnt a good idea....then back to the drawing board....