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Tuesday, October 19, 2010

October 19th:)

~~on a side note today is Frank's last year of his 30's...today he turns 39!!! Happy birthday to the man that is AWESOME~~my Frank!

~The last few weeks have been a struggle for my Aubrey, she has been so challenged, so put to the test and today she is sick, I really feel like it has worn her down and beat her up...so now she is sick~~and sleeping like no tomorrow! School is her safe zone her place to succeed her place to shine...she has complete acceptance and love! but the loss of the hearing she had left has just turned her world upside down! The desire to hear more the want is so strong, I hate seeing her get so frustrated because she just cant get it. Today we see yet another new audiologist...here in Great falls, I have my fingers crossed that this one will work out. We had gone to another one across town that was suggested by our old audie and wow, she was HORRIBLE. I should have known when I called to make the appointment, it was like pulling teeth to get them to cover a interpreter they felt "it was not fair that they had to pay for this out of their pocket" fortunately there are laws the ADA is my friend and wow I have learned a lot!
We are still awaiting a call from the Denver clinic where will go for the beginning of our cochlear implant process....I emailed the audiologist today and hoping for a call back this week! we are ready for the path to begin! we are ready for more options!
~~I had a meeting with Madie's school Lewis and clark....and wow for the first time in her schooling I felt AWESOME. we were all a team and we were all going in the right direction...we all wanted what was going to be the best for Madeline:) she will be sharing time with MSDB and Lewis and Clark....she will be mainstreamed but then go over to MSDB for lunch some sign language social time with her peers...and a interrupter will be over for Madie at Lewis and Clark in the morning till lunch time for her they call it sign support:) Then we also have started talking with the cottages about Madie spending more time there...maybe a few times after school staying for dinner then once a week sleeping there.....AWESOME!!!
~I on the other hand have overwhelmed with being an advocate....but i as always will continue to push through:)

Friday, October 1, 2010

understanding a cochlear Implant
~~1. the outer ear collects sounds waves that pass through the air
~~2. the sound waves vibrate the eardrum and the three tiny bones (hammer, anvil and stirrup) in the middle ear
~~3. This vibration moves the tiny hairs of the sensory cells in the inner ear or cochlea: sensory cells convert the vibrations to an electrical signal that is sent to the hearing nerve
~~4. The signal travels up the nerve and into the brain, where it is interpreted as sound.

Hearing with a cochlear implant
~~1. sound is captured bu a microphone on the sound processor
~~2. the sound processor converts sound into detailed digital information
~~3. the magnetic headpiece sends the digital signals to the implant
~~4. the electrode array on the implant sends electrical signals to the hearing nerve
~~5. The hearing nerve sends impulses to the brain where they are interpreted as sound
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....