We want to begin by reminding everyone that we were completely unaware of what to expect going into this appointment this morning. We will also add that the way it went was nothing like either of us had imagined. Unfortunately, there is no wonderful video to show capturing this “magical moment.” Mostly because there really wasn’t one, we are sad to report. The audiologist herself was nice, but not nearly as knowledgeable about everything as she had been touted by her peers and colleagues. She set the tone of the visit quickly, telling us that we would be trialing a BAHA unit on him, but that unfortunately he would not be going home with one. We were afraid of that despite everyone telling us that we would most certainly have one to come home with to trial. She explained how it worked and showed us the ins/outs of the unit. There are two photos on this post that give you an idea what it looks like. The white band is nothing more than elastic with Velcro that you can purchase and make at any crafts shop. The black box is the BAHA unit itself. It is designed for now to sit behind either ear or even on the forehead to transmit the sound. Eventually, if Elias is considered a candidate after age 5 he could have them implanted surgically. Without any real warning she began to place the band on Elias head, which he wanted no part of, one of the fears we had. He was crying and fussing. He finally calmed down after a few minutes and I asked when or if we would turn it on. The audiologist said, oh it is on. That was upsetting because we were unaware, not that the video taping of the tantrum would have been what we wanted, but still I mean your putting this on a child that has NEVER heard a thing in almost two years and you do not prepare the parents for the potential moment of truth? Elias was not really acting as though he was hearing anything. Now that he was somewhat calm we expected to see a kind of EUREKA face to sort of signal, WoW what is that. Nothing :( I asked how the setting process went and she said that it was at normal. So in essence Elias should have been hearing like a normal person. He just was not responding in any way that would indicate he was actually hearing. Not even to our voices as he looked at us. She took Elias and Katharine into a testing booth. It was dim to subtract visual stimulation and speakers boomed the audiologists voice with flashing lights to test the response. The results were that they can not prove that Elias is hearing with this BAHA. That was a bit demoralizing. She began talking to us about seeing if she could let us take this one home because of his inability to register a positive result. So we ended up with one to trial for 3 weeks to work Elias into the device and see if we notice any signs of “hearing.” So only because Elias failed to demonstrate the ability to hear with the unit were we able to have one to trial. We tried to discuss the financial aspect of all this and she just didn’t have any information for us. She did become concerned when we explained the lifetime cap being met on the primary insurance so we only had Medicaid for insurance. Apparently there is a separate person for this, understandable, but why were they not part of this process today, another example of not being proactive. Why would you waste time trialing something the family may not even be able to afford at $4100 each. For now we only need one, but we may need a second if/when they implant. That is like test driving a Lexus, falling in love with it, but since you can’t afford it there is a YUGO (remember those cars? Yugo where it goes!) for you to drive off the lot. Based on our observations, Elias was not hearing anything. His reactions were typical and there was nothing out of the ordinary. The tantrum was over the band on his head and not overstimulation. I think even the audiologist feels the same, but is hesitant to come out and say it. She would not answer a direct question if this was normal, she skirted the question saying she could not prove he was hearing. We are going to start the process of trialing it here at home and hoping for a different result. We do have a theory. She placed the unit behind Elias’ atretic (unformed) ear. The way the unit is designed that shouldn’t matter but we want to try it on the other side to see if we get another result. Maybe we were hoping for too much today. Not that we expected Elias to just want to listen all day, but we figured we’d get a little, “Whoa, what was that” face even if for just a second. It was not a positive experience for Elias, that he can tell us in his own way. We wish there was a more positive outcome to today. We can only hope that it is something that time helps with. We have heard it takes some adjustment, but to not give any response is concerning to us and apparently to the audiologist as well.
As we typed this update we decided to give it another whirl. After 20 minutes or so trying different things to illicit a response, the jury is still out. We are still not getting what we think is a response or reaction to the new stimulation. Fortunately, the speech therapist will be visiting tomorrow and maybe she can offer some insight. It is not like we expected him to just wham slap it on and he hears and understands, but we hoped there would be a more definitive signal. I think on the positive side he doesn’t seem to be over stimulated if he is indeed hearing something. At least he is not even giving that type of a reaction. We would like to thank you all for your amazing support. This was a day we have been waiting for and have fought and advocated for going on nearly 2 years. We could not have continued to harness the strength without you all. Elias deserves the interventions and needs them to continue to thrive. We will continue the trials and keep everyone updated on how it goes.