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Conf Call, Park, Stronger

posted May 21, 2012, 7:38 AM by Manny Wilke   [ updated May 21, 2012, 7:54 AM ]
Last week during the @ Watertown baseball game, I had to sweep Manny & Abe back in the car to watch a movie while I took a very important scheduled conference call from Dr Roberson to discuss the Audiology results and next steps. He stated that the hearing test is still somewhat confusing as to the inner ear function and isn't 100% confident in the results - it becomes difficult to "mask" (cover up) one side if the hearing isn't well ..making it difficult to really test the other inner ear individually. He thinks there may be something going on with the inner ear that it is not receiving sound properly and is as frustrated as we are. Dr Roberson understands all there is to know about hearing; he is rarely confused with hearing results and surgery results and this one has thrown him for a loop.

Our options for hearing now are to surgically implant an abutment (snap) for his current aid to pop into on the left side of his head or to use the softbands (headband that holds the hearing aids) we have been using from birth. Nate and I have decided not to do any additional hearing related surgery anytime soon and plan to continue with Manny's current or similar hearing aid/band. We are hoping to let technology advance and if nothing else, eventually implant the magnet versus the snap. While the softband gets in the way, gets hot, causes headaches, causes feedback, we just don't want to do anything permanent right now. There is still hope for more hearing restoration surgery, but we won't know until after a CT Scan January 2014. Dr Roberson wants to be in touch 1-2x a year to get a progress update on his hearing tests, speech, and social skills - if something changes with any of these it may prompt us for a different solution. I did ask if there was anyway the new implant could have become dislodged and Dr Roberson said, yes, but even so - he wouldn't do any surgery now. Manny's body seems to fight it and he wants his body to be older before he does any additional surgery; Dr Roberson wants to watch his ears mature and grow. While there is still a chance for natural hearing "it of course decreases with every surgery."
After we went swimming at the YMCA, I had put alcohol drops in Manny's ear to help dry up the ear. Manny screamed as his throat was burning, and Dr Roberson stated that his ear drum may have a hole because the alcohol somehow reached the estachian tubes. Super. So, we need to go to our local ENT to have it checked out - but because of the unnatural curvature in his ear canal, he probably won't be able to tell. We need that to be healthy with no hole, so the poor kid can swim without infection this summer.
After the conference call, we returned to the baseball game, only to have two 30 minute rain delays. Whenever it rains, it causes panic because I have to make sure Manny stays dry as his hearing aid can't get wet. If I take off his hearing aid, then he cannot hear and the area is surrounded by cars/streets. After the rain stopped, Manny and Abe played at the park next to the field. I saw Manny conversing with middle school/high school kids at the park and it was making me nervous. Parks bring out the non-stop questions with kids/strangers about his ears and his hearing aid. But, I let him converse and stayed put but I felt slightly sick to my stomach. While he usually does well fending for himself, we were in a new city, a rival city (!), with older kids - all of whom were unsupervised at the playground - so anything could happen. When I finally went over there, the kids were like "he's so cute!!!" and were just having a great time playing with him. Manny had made friends, older friends, and even played tag with them. He was just fine. So, I guess, Watertown is ok afterall :) With that being said, the next day I signed him up for.....
Thanks to Nana Wulf who shared the following video with me.   I think I have to have strong shoulders as a parent -  this doesn't even compare. Happy reality check Monday!