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Audiology Appt, Oconomowoc Park, Stronger Shoulders

posted May 10, 2012, 12:30 PM by Manny Wilke   [ updated May 10, 2012, 12:37 PM ]
Yesterday we drove to Children's Hospital in Milwaukee for Manny's big hearing test. Unfortunately, it was not good results, showing no improvement from the surgeries and actually slipping backwards in one ear. For the first time though, it came as no shock. He hears well after all surgeries and then it slowly decreases after a few weeks -  we get to see a taste of what it's like for him to hear well and then it gets slowly taken away from us. The decent news is that he can still hear pretty well with his hearing aids on (although his inner ear hearing has slighlty decreased) and while I always envisioned his hearing aids at "temporary equipment" - that now may not be the case as he is Moderate-Severe & Profoundly deaf without his aids. His hearing aids are 4.5 years old and we have not purchased new ones because we were hoping that the surgeries would be more successful...so we will now probably have to revisit this. In one way, it's somewhat of a relief. I'm done. We're done. No more daily guessing and obsessing about his hearing, did it work, did it not work, did it work, did it not work.
 
The other day while at the Oconomowoc vs BD baseball game, I took Manny & Abe to the grand-puba park across the street. It's like Disney World and hopefully our new Waterworks Park can be something similar. I had noticed a man & woman signing to each other in the corner. About 20 minutes later, I noticed a 2 year old girl crying "mama"...."mama" and she was walking around the park. A man closer to the girl knew she belonged to the couple and kept saying "excuse me, excuse me, is this your little girl?" but they did not notice him because they could not hear him, and the man couldn't figure out what was going on. I quickly walked over to the 2 year old, picked her up, and took her to the couple while politely telling the man, "I believe they are hearing impaired". Of course they do not notice their little girl is lost, they cannot hear her cry "mama"...."mama".....and it brings tears to my eyes to think of the adult struggles Manny may head into if we cannot restore his hearing. Granted, he can hear with his hearing aids on, so this situation may not happen with him....but, will he need special equipment for when he sleeps (and doesn't wear his hearing aid) to wake him up in the event of a fire, special equipment to "feel" his alarm clock, ... and how will he hear his baby crying at night? Things the "typical" person doesn't have to think about. Although, I think the word "typical" is now considered inappropriate language in the special needs community....but you know what I mean.
 
The path has veered a new course and I guess I'll know more when I hear back from Manny's surgeon as to any next steps regarding his hearing. We will focus on the stage 2 reconstructive surgery in August making his Big Boy Ears look even more perfect-o and then we sit back and live a no-constant-surgery focused life. I noticed a new sign at the YMCA this morning, "Every morning I do not ask for a lighter load...I ask for stronger shoulders..." and it seems somewhat fitting.
 
Thanks for your continued thoughts and prayers.
 
 
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