Tuesday, May 5, 2009

A Special Specialist

I have been able to find some resources to learn more about Auditory Neuropathy and have found some great support. I did contact Dr. Berlin, the Auditory Neuropathy Spectrum Disorder specialist I mentioned earlier. I sent him an email to request help and give him a short history on Blair, and he called me within an hour. Within an hour! What kind of specialist does that?! One that brought tears to my eyes by the end of the conversation, because he overwhelmed me with his willingness to help us with Blair. God has really brought some amazing people into our lives in even the last few days, and I feel more encouraged about Blair's treatment than I did at first. I am so overwhelmed by the amazing support we've had from friends and strangers alike! A sweet speech pathologist friend has offered her knowledge for which I'm so thankful, and I've been able to correspond with several parents of other children with AN.

I've been really watching Blair over the past few days, and she hears. I know she does. She can hear even a whisper. The thing is, we don't know how clear she is hearing what she hears. With AN, it can sound like there is a buzz over all of the words -- like when you're trying to get a radio station and you hear the words but there is static too. If you turn it up, you turn up the static and the words. That is how AN is. We just don't know how much "static" Blair has. You can hear a simulation of several different severities here.

Our next steps.... We are waiting on someone to come from Babies Can't Wait and GA PINES to evaluate Blair's language, so we may know more about where she stands after that, so we can get her started in an early intervention program. I also made an appointment with an ENT at Emory to get a second opinion on her treatment. That will be in June. We haven't gotten a first opinion yet, but I didn't think it would hurt to get a second one regardless! I will continue to update.

Hello from mommy and Blair! (She's thrilled.)


Robin said...

This is good information and I was glad to read about it even though you and I had discussed it fairly thoroughly the other day. I didn't know about the Emory appointment -- good for you, sister. Your aggressive research and efforts are, in my opinion, admirable and inspiring. Blair is one lucky little gal -- and such a CUTE one too!! :)

Unknown said...

I agree with Robin. You are being pro-active, along with educating yourself & that is the best thing that you could do for Blair.