New audiologist, new therapist, and new testing dates

This past Monday, Charlotte, Lily, and I spent two and half hours at FSU's Speech and Hearing Clinic. Lily had her first AV session since July 31. We have a new student intern that will work alongside Janet this semester. We all like her- she is fun and great with kids. I foresee that it will be hard getting attached to a new intern only to have her leave at the end of each semester. Lily has made some amazing progress since her 7/31 session and met many of the goals that were set then, like referring to herself by name (she calls herself "Neen"), responding to the question "where" with "in", "on", and "under", and following 2 step directions (like "pick up your shoes and put them by the chair". We are still working on that last one. I have noticed that Lily just smiles and nods "yes" when she doesn't understand what is being asked of her. Sounds like adults with hearing loss often do that too.

While at FSU, we also met with the audiologist there. She was wonderful and if we had seen her from the start, we wouldn't have had nearly the trouble that we've had trying to obtain Lily's aids. Lily will get her 2 pink hearing aids on Monday the 18th. It was no big deal for our new audiologist (Selena) to order them and get them within days. She actually already had them in possession at our appointment on the 11th, but she needed to get new molds made of Lily's outer ear. Selena was so helpful and took the time to explain what I need to do to take good care of Lily's aids and she took some of the mystery of it all away for me. I was kind of afraid of the thousand dollar equipment hanging from Lily's ears but not anymore. It is actually pretty ridiculous how little information our previous audiologist gave us about anything regarding Lily's hearing loss or her hearing aids.

I finally got a date for Lily's ASSR. It will be October 19th. I would have preferred for it to be sooner than that, but I will take what we can get. It means the September 27th appointment with Dr. Antonelli will need to be postponed because that was supposed to be a follow-up appointment after her testing was completed. I am a trouble-maker I guess though. If I just went along with what they scheduled for us, which was a non-sedated CT scan on September 19th and more audiological testing that same day, then we would still be meeting with Dr. Antonelli at the end of this month. But I did a lot of research and asked lots of questions on a Yahoo group for parents of children receiving cochlear implants and found out that for young kids, the ABR or ASSR is pretty much standard procedure. Most audiologists agree that soundbooth testing for kids under the age of 4 is unreliable. I saw that for myself when we were in Gainesville last time. They were leading Lily to respond to sounds when I knew she could not hear them. Waiting for the ASSR will be worth it if it means we will get accuracy regarding her level of hearing loss. I am trying to put on my thick skin and not care if I am labeled a trouble maker. My next task is trying to get them to coordinate the CT scan with the ASSR so that Lily only needs to be sedated once. That seems like it should not be a big deal but somehow I think I am asking something out of the ordinary. After looking at pictures of CT scan equipment, I am pretty sure that Lily would be too freaked to sit still long enough to get a good scan.

We go to a swim party on Sunday for local families that have followed the AV path for their children's hearing loss. We are looking forward to meeting other families that are in the same boat we are in.....


-Kriste