A Must Read Update!

This is certainly one post you do not want to miss! We have some information to share about Elias! Yesterday we had a marathon day of appointments at Children’s. One of those with Audiology. Our Aural Rehab Therapist helped us to get an appointment to re-evaluate Elias’ BAHA settings and to conduct a standard hearing test to see if there is any change in response.
The original audiologist that fitted Elias with the BAHA initial is no longer at Children’s, she moved – can we get a big AMEN! You may remember our issues and push-back we received from her when we questioned his lack of response. She was even rude to our speech therapist, telling her that she needed to know her role and stay within it. We have been trying to meet with the new audiologist that took over the BAHA segment. The past few months have not allowed for that until yesterday. We have added him to the team and he offered some interesting perspective. He really took the time to explain things as well as encouraged our questions. In fact he was very patient and prodding for more once we were done. We appreciated that very much. We started with a standard booth test. Here is a very controlled environment for ambient noise, frequency, volume etc – so nothing like the world environment. They placed a bone conduction device that was attached to some wires – allowing more control for testing and response purposes. Elias’ BAHA was not used during this testing.
The results were interesting and positive. Elias was indeed showing some behavioral responses – mostly negative - to certain pitches and frequency. In the previous two testing over the last year there has been nothing. The negative type response – mostly facial expressions – are typical and expected due to the intensity of the frequencies they used as the looked for his threshold. In short, this is positive. For the first time in his life, Elias was exhibiting a response to a form of hearing stimulus.
Keep in mind this was a very controlled environment and that he was not using the BAHA so this does not mean he is “hearing and interpreting.” What it does tell them is that the course of action we are doing – intensive therapies and follow-ups are benefiting Elias! We are not able to really notice it outside the controlled environment, but it is happening to some degree. When the settings were check on the BAHA, low and behold, as we asked about many times it indeed was not set properly. He adjusted it, but cautioned us that we would still not likely notice a difference.
So what does this all really mean? Well first off – as mentioned – this is a significant and positive first step! What we need to be cautious of, is the fact that this does not mean Elias is hearing yet. He is responding appropriately through behavior to specific thresholds of sound and frequency. The potential still exists for this process to take years to develop into cognitive hearing of any level. This first step reassures everyone engaged with his hearing that we are on the proper treatment course. We just need patience, perseverance and persistence. We are moving forward with the process towards purchasing Elias’ own BAHA –roughly costing $4,000 – and returning the test one we have been using. It is beautiful knowing we are one baby step closer toward the hope that Elias will one day hear us tell him how much we love him. We thank God for the blessing he supplied us with this little sign of hope.
Thank you all for your continued thoughts and prayers. We continue to draw much needed strength from them. Please feel free to comment with your thoughts below.