This afternoon I finalized plans for our trip to Florida to see Dr. Berlin. Dr. Berlin has been the leading researcher in Auditory Neuropathy Dys-syncrony for quite some time now – I guess since he and colleagues discovered and named it. I’ve been in touch with him since very soon after we got Blair’s diagnosis, and he told me today that he is looking forward to seeing her “after all these years”! It really has been almost two years exactly since I first called him. I had no idea he would call me back within an hour of my leaving a message, and after talking with him, I hung up the phone with thankful tears in my eyes. He’s just such a wonderful person. I could not do Dr. Berlin justice by describing him here, but I found this interview with him that I thought was very neat and informative.
Asking me to put her bib on before she eats her ice cream. =)
The plan for Florida is to have another sedated ABR (auditory brainstem response) but in the OR this time. She will also have genetic testing because Dr. Berlin says they have found 9 genes that cause ANSD. If she has the gene, there’s no sense in waiting anymore to do the CI surgery. If she doesn’t, then we know the AN was caused by her troubles at birth. She will also have a speech evaluation. All of this will be done over a couple of days.
Blair will be the very first patient of Dr. Berlin’s new Center of Excellence for Auditory Neuropathy. I guess that’s exciting, right? To be honest, all I feel is stress at this point. I just pray that we will leave with some answers, clarity, and peace.
The big question is whether or not Blair needs a cochlear implant in order for her to be able to develop speech appropriately and function as a auditory oral individual. CIs have been successful for many AN kids, but with Blair’s amount of hearing (it’s normal with her hearing aids), it’s a tough decision to take that away from her. The surgery would take away her hearing in the ear in which the implant is placed, but she would obviously hear in that ear when wearing the CI processor, which is sort of similar to the behind the ear hearing aids she has, just bigger and without the ear mold part. The objective of doing the surgery would be to allow her access to clearer sounds, whereas right now she might be hearing sounds with static behind them or garbled. The interference could be affecting her ability to hear some sounds and prevent her from reproducing them as speech. It’s a confusing hearing loss that’s hard to understand. She’s talking; she’s just not very clear.
I guess that’s about all I know for now! Your prayers will be much appreciated in this tough time for us as parents.