Moment of Un-Silence

Wow, it has been quite some time since I have blogged. I have sent things into my micro-blog from my phone – but have been so busy with appointments. I am going to try and do better. It seems our appointment load is lightening up and I will have a little more time. Today I want to share something that happened yesterday during my son’s aural rehabilitation therapy. It was a defining moment for me, as a father realizing what this journey is all about.

Yesterday we had our weekly Aural Rehab Therapy. There has been some excellent progress made, especially noticeable since the settings were altered – something we had questioned for awhile. The therapist had my son sitting in a high chair and playing with various kids musical instruments. My son  was very engaging and interactive – especially beating on a drum! As my son  plays the therapist would make various sounds - The Ling 6 sounds in addition to what I call a throat trill – a high pitched rolling sound. The Ling 6 sounds are particular sounds that occur at particular speech frequencies or pitches. She would make them randomly looking for auditory response. Over the past 8 months there have been lots of, “was that a response?” Never that definitive ah-ha moment that everyone we have spoken to over the past several years has mentioned.

Being a Strong Advocate: A Success Story

Over the past 2 1/2 years my wife and I have had to wage many battles in the name of advocacy for our son. None of those have been more important or as frustrating than the advocacy surrounding his hearing. It's been amazing how much resistance and how many roadblocks we've encountered on a matter that has been deemed so important to the success of the child's development. Despite these hurdles we have continued to diligently advocate and actually achieve a few small victories. While we are far from winning this particular battle, we feel for the first time we are on the correct path toward success. This segment of his hearing battle started a year ago. Due to the complexities of his airway ENT was able to validate his hearing as a secondary priority. They truly had a valid point that we accepted and understood but we refused to concede. The focus was the first principle of medical priorities known as the ABC's of medicine. These are airway, breathing, & cardiac. I remember the pivotal discussion that would become our first small victory. We explained how we understood and respected their logic based on the ABC s but added that our son too needed the ability to learn his ABC s. We raise the notion of adding a second ENT that would focus solely on hearing and the idea was received well, put into effect and ultimately worked out and my son's favor. Our initial ENT specialize in airway and the addition of a second EMT provided us with someone who specialized in the ears and hearing. So far it is worked out wonderfully, but had we not continued to advocate & provide a strong case our son would not be in this scenario today.