Let me explain....
There are 2 main tests that that they do on children. The first one is are where sounds come out of a speaker and if Ellie hears this and looks towards the window, she will get rewarded with a puppet. The second one is where the audiologist stands behind Ellie and uses different noise makers to see if Ellie turns or responds.
There are many problems with these 2 tests and Ellie...
1. Ellie does not sit still, so trying to determine if she has turned her head to the noise is quite hard
2. Ellie does not understand the concept of the puppet reward, so does not know what she needs to do
3. Ellie can sometimes remain quite blank in the face, so its hard to understand if she is responding to noise.
Today we had another hearing test, however for this one the audiologist decided to test Ellie whilst she was lying down. Unconventional, I know. But this is where Ellie was the 'stillest' and we could get a better result. She responded ever so slightly to 2 noises, by 'stilling' and eyes widening.
This is the most results we have ever had from a hearing test, however the results are still clear as mud to me. I still really have no idea how much Ellie is hearing, or worse still, is not hearing
Next week we are going to the Royal Childrens Hospital for a different type of hearing test called a 'stimlab' test. The difference with this test is that instead of boring, monotone sounds. They use more exciting sounds such as birds, dogs, bells, phone ringing, car etc. The hope with this test is that these noises gain Ellies attention better, and she can give us a clearer picture of what she can hear.
One bad thing that came out of todays appointment is that the audiologist thinks that both of Ellies grommits have come out. I really dont know how as we are so careful with not getting water in Ellies ears. I have made an appointment at 8am this Thursday morning with Ellies ENT, for him to check if the grommits have come out or not.
At this stage we are going to keep persisiting with regular hearing tests to see if Ellie can paint a clearer picture for us. I still want to get a MRI or Catscan done of Ellies ears to check if the bones have formed properly, as there is also a possibility that they may not have. Just like her eye never formed, and she also had a cleft lip/palate
Fingers crossed those grommits are still in those tiny ears of hers!!!
Can she not have a sedated ABR done? That test would be accurate and give you a proper diagnosis!
ReplyDeleteHope you manage to get a more accurate result from the RCH.
ReplyDeleteAlso hope Ellie's grommets are still in!
I can feel your pain on this one. Kaylee saw an ENT who determined that her left ear canal was not perforated. We know she has fluid in both ears thanks to an MRI done for the neuro, but her canals are tinier than the tubes. Our only hope is for a bone-conduction hearing aid...but first we need to have a CAT scan of her temporal region and a sedated ABR to determine the level of hearing loss. Someone else recommended that test in your comments, so maybe ask the doctor about having it done for Ellie.
ReplyDeleteI hope that you find that her tubes are still in place (is that what grommets are?). It is one less thing on your plate to worry about.
Sending hugs!
Thanks Ladies.... Jolene, we have had a ABR and that showed that Ellie had a mild - moderate hearing loss. However they are trying to use the hearing tests to determine exactly how to set her hearing aids. Apparently ABR's dont give you the right information on how loud to have the hearing aids set at. This is what I have been told anyway... I might need to question it again. Thank you!!!
ReplyDeleteJasmines hearing aids have always been set to her ABR's! She does do testing in the booth as well, but they have never set her hearing aids according to that, more or less the booth testing will just be confirming that the aids are infact working for her! The same with her cochlear implant, they do booth testing as well and that is just to make sure that yes in deed the CI is working! I pray one day she'll be able to talk and just let us know, lol!
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