Early this morning we had our first appointment with the ENT (Ears, Nose, Throat) doctor. We braved rush hour traffic to drive up to Northside’s Scottish Rite Children’s Hospital and were pleasantly surprised. It’s a very nice facility – modern, well equipped, and with a friendly and knowledgeable staff (except they couldn’t tell me where the “Scottish Rite” name came from – ha, I bet they didn’t see THAT question coming!).
As we unloaded the car, I joked it felt like Disney World. A stream of cars were entering the parking deck, unloading strollers left and right while families were all marching down a well manicured path to a campus of modern buildings. All that was missing was the “all is well” cheerful music coming from speakers hidden in the bushes.
We had a great visit with the ENT doctor, and then an even better one with our new audiologist. As expected, this was more of a meet and greet and discussion of next steps:
- On July 2nd, Fiona will have a retest of the Auditory Brainstem Response test I posted about earlier. Different doctors, different equipment – a true second opinion. While we are not expecting a different result, I can’t help shake the irrational hope that maybe, just maybe they made a mistake. We shall see.
- In parallel, we will be scheduling time to get an MRI done. This will help determine the extent of the damage and what treatable options are available. This will also help discover if Fiona is a viable Cochlear Implant candidate.
- We will also be conducting lab work (blood samples) to analyze the health of other parts of her system (Kidneys, etc.) that in small cases can also have problems with children with profound hearing loss. Unlikely, but being thorough. As part of this, genetic testing will also be done to help determine risk factors for future children. (Eliza and I do want to have another child at some point, so this is a very important result to us).
- We will be meeting with an ophthalmologist to also get her vision checked out. So far Fiona’s eyes seem perfectly fine and she’s been tracking movement for a couple weeks now, so hopefully all is well there. The Isham family has pretty bad eye genes though, so there’s always a little worry there.
- Assuming she fails the retest, Fiona will be fitted for hearing aids that will need to be evaluated for 3-6 months. While we don’t expect them to have any impact, its a part of the procedure that must first be ruled out before CI.
A lot of doctor’s visits to come! Next week we also start meeting with speech therapists to determine next steps there. We’re particularly excited to check out the Auditory Verbal Center for which we’ve heard fantastic things, and is a close connection to our good friend Zoe. I’ll definitely post more on that as we learn.
So no big news today, but the start of a roadmap.
Would love to hear more from our Atlanta friends on any experiences, positive or negative, with these programs and any others you’d recommend. We’re in total fact finding mode right now.