More Like A Sidestep

This morning we had our visit with Dr. Choo, Elias’ ear specialist followed by the dreaded audiology follow-up. Not that we did not already, but our respect for him was elevated today. Within minutes of talking to Dr. Choo it was clear that things were not right. He was clearly not pleased with the answers to our questions and what he was seeing from Elias, who was wearing his BAHA. It did make sense and he was searching for the next step. We began discussing the ABR results from January.  We asked him very candidly if we read him correctly after the last visit that he was not hopeful that hearing aids would not be effective. He acknowledged that and admitted he was surprised at how well the ABR turned out. It was obvious however that the paper Elias did not match the physical one. How many times have we heard that one? He ran through several thoughts and answered our many questions including how much consideration was being given to the “poor ABR” from Maryland. He agreed that while it was not optimal it did obvious paint a different picture, maybe even one closer to what we are witnessing. His opinion was that with the ABR showing such magnificent levels, Elias should indeed be responding. We shared the audiologist opinion, he professionally declined to comment, but it was implied he did not agree. He did acknowledge that there can be issues to the hearing nerve as well that doesn’t allow the sound to process as it should. So what now? Then he mentioned something about the test results from February matching that of the January ABR. What? I asked how there could be reference numbers when Elias did not respond to stimuli, referencing and showing a copy of a report that was supposedly sent to him by the audiologist. This bothered him obviously as he realized that information was not matching up. So now I’m wondering how this “test” appeared in Elias file? There will be more on that i am sure as I investigate this through. At this point he told us that as far as he was concerned neither ABR we had at this point could be considered valid enough to produce enough audiological information based on performance to truly decipher what is best for Elias. Another ABR must be done, no question. We began to discuss upcoming surgical dates, but they are farther out than he would like. So we are hoping that when we get the date for Colorectal surgery that it can be piggy backed onto that. Dr. Choo left it there for the time being wanting to further discuss things after the audiology sound field testing. So we went for that and had to face the audiologist for the first time since the phone drama 2 weeks ago. It was not horrible, she had obviously not been made aware of the content of the appointment with Dr. Choo maybe by his design? She went on telling us about delays that can occur because he has never heard before and how this is normal, etc. I very directly told her, “while i appreciate your opinion on this matter, it is difficult to accept when we have 3-4 other people telling us the contrary and that there should be a reaction based on the results.” I made sure to include that Dr. Choo was one of those of that opposing opinion. All she could do was shake her head and we moved into testing mode without further discussion. At this point I was feeling very confused and a little angry over the disparity between the two appointments. After the testing she explained how the only time they could get a reaction of any kind was very loud, very high pitch sound. Elias made a very ugly face both times, but he did not respond to anything after that. When I told her that Dr. Choo wanted to speak with us again after hearing about the results we just got her face dropped and she turned a little white. Elias nurse glanced at me a gave a grin acknowledging that she noticed it as well. Dr Choo came back and we resumed our chat with the audiologist hovering in the background. So here is where things stand in his mind. We need to repeat the ABR sooner rather than later. The audiologist feels as though Elias should continue to wear the BAHA because he may “awaken” to sound and suddenly begin responding. Dr. Choo was in agreement to the continuing to wear it portion citing no harm no foul, but was not certain that was a realistic plan to be left at that. So he would like to rule out some specific things. We will be adding yet another doctor now, a developmental pediatrician. She specializes in complex children with hearing loss and can assess Elias cognitive level more appropriately than the standardized testing. We also will be going into Aural Rehab for more of an assessment presentation. They will help isolate if/how Elias in receiving and interpreting sounds. This should hopefully give us some more information so we can appropriately aid him for communication or effectively decide how we will communicate otherwise. This was very disappointing, heartbreaking and frustrating all at the same time. While it is not truly a step backwards we have made zero progress in the last year and very little in the past three months. So we see it more as a sidestep. Sadly, the earliest the ABR will be done is likely mid-May, two months away. God only knows what the process will be like if we achieve the same results, as wonderful as that would be it does no good if Elias doesn’t duplicate with aiding. I think the toughest part has been advocating so strongly, barreling through barriers, and actually getting this far only to realize we were walking in place. So back to waiting without a real end in sight. It is another unwelcomed reminder of how complicated and full of mystery Elias is for these doctors. As we said very heartbreaking, more than we can ever describe.