We're headed to Duke again this morning. Gwyneth has an ABR at 8:45 on Thursday morning. Determining exact information concerning her hearing loss has been a very frustrating journey so far, as it has taken more time and energy than it should have...BUT, we're praying that this ABR will give us the exact information to clearly understand the source AND extent of Gwyneth's hearing loss.
We have a pre-op appointment this afternoon, as well as an ENT appointment for Tricia (to talk about her continuing sinus issues). We'll also have a consult with Gwyneth's audiologist tomorrow afternoon...hopefully they'll be able to adjust her hearing aids so to the most accurate settings.
Thanks for your prayers!
Nate
praying that you get results that will give you more insight into how to help your daughter develop and explore to her full potential. thanks so much for the opportunity to ask the Father on your behalf!
ReplyDeleteI hope you can get some answers.
ReplyDeletePraying that God will help the doctors to figure out Gwyneth's exact needs. She is one special little girl and the whole world should be open to her! good luck!
ReplyDeleteI love you guys and am praying for some good solid answers for both of your sweet girls Nate.
ReplyDeleteLove and Hugs, Laurie
I am praying for you that you will leave these appointments knowing the next steps to take. I can imagine your frustration.
ReplyDeleteDo they know if the hearing loss is conductive or if it is due to the bones inside the ear?
ReplyDeleteI hope all goes well for you and the girls ~~~
ReplyDeleteHave you heard anything about a memorial service for Eva???
My 4 year old niece was born at 30 weeks with complications and she was just recently diagnosed with Auditory Neuropathy.
ReplyDeleteThere are large individual differences between children who have Auditory Neuropathy. However, there are some common features that are usually seen with auditory neuropathy, including:
Hearing loss of some degree.
The degree of hearing loss can vary widely from mild to profound loss.
The degree of hearing loss is not predictable.
Hearing may seem to fluctuate from day-to-day or even from hour-to-hour.
Difficulty understanding speech, especially in noise.
Speech understanding difficulties that are worse than can be predicted from other tests of hearing function. For example, a child with Auditory Neuropathy who has near-normal hearing sensitivity might have a very difficult time understanding speech.
Some people find it helpful to think of hearing with auditory neuropathy as similar to hearing an out-of-tune radio. With a radio that is slightly off-station, you can hear that there is speech, but it is too fuzzy to make out the words clearly. Turning up the volume doesn’t help, because it only gets louder, but not more clear.
If you would like to know more about what the effects of speech understanding might be with auditory neuropathy, talk with your audiologist or early interventionist.
What Causes Auditory Neuropathy?
There appear to be multiple risk factors for auditory neuropathy. It can be inherited genetically or caused by trauma or disease. The most common risk factors for auditory neuropathy that are known at this time are:
Lack of oxygen (anoxia) at birth
Hyperbilirubinemia (jaundice) requiring blood transfusion during the newborn period
premature birth
Infectious disease such as mumps
Immune disorders
Genetic
Neurological disorders (e.g. Freidrich’s ataxia, Charcot-Marie-Tooth)
hi. hope everything goes well at duke. i saw this link at another blog i read and thought of you guys.
ReplyDeletehttp://okperisplace.blogspot.com/2010/03/quilt-raffle.html
it's a great strides thing. :)
Continuing to pray. Hope you get the answers you are looking for with this test.
ReplyDeletePraying you get the answers you need!
ReplyDeletestill praying for your family!
ReplyDeleteHope and pray that all goes well. :-)
ReplyDeleteAhhh, the quest for answers. I'm familiar with that one. Good luck! (Seriously, I'm not being facetious/sarcastic).
ReplyDeleteI hope you get the information you need.
ReplyDeleteNate/Trish,
ReplyDeleteAre you going to have Gwyneth sedated for the ABR test? At her age I'm sure that was recommended.
I can tell you that the ABR test for my son has proved to be very accurate. He was diagnosed with hearing loss at birth. They did the ABR on him when he was only 2 weeks old. He'll be 10 this year and now that he can do the hearing tests on his own, we have something to compare to and it amazed me how very close the tests of today are compared to the ABR from years ago.
I know you have many family and friends to lean on for support, but should you need one more, I'm here for you. I also have a daughter with CF.
Feel free to email me. I'll email you somehow...I think maybe through your photo website. That way you'll have my personal email and I don't have to post it here for everyone to see.
Best of luck!
Susie
Keeping all of you in my thoughts and prayers. I hope that you get some helpful information and that all will be well with the "girls".
ReplyDeleteKim in Canada