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CT Scan Results, GBO, Hi-Ya

posted Sep 20, 2012, 8:27 AM by Manny Wilke
I spoke with Dr. Roberson in length on Tuesday regarding Manny's CT-Scan and the 3 future options. Unfortunately, I do not like any of our options. The problem is that we need to "stop the downhill slide" says Dr. Roberson. He suggests, if it were his son, to close up the Right canal, attach the hearing aids to his skull to let him heal and hear. The problem is that his Left ear isn't hearing, so we have only 1 ear/inner ear/cochlea to work with. If the infection eats away at his Right ear hearing, we are totally...XXX...and basically, we would then go down the path of Cochlear Implants...not a good solution...AT ALL. AT ALL.
 
In order to close up the canal, he would have lift up the medpor implant (not ideal as it is new from 8/8/12), remove the ear drum, remove the skin on the ear canal he created. If you don't do this a cyst can form. He would have to be extremely careful not to hurt the inner ear during surgery as well. While totally against implanting the hearing aids to his skull, my opinion is shifting as eventually he will want to be done with the softband aesthetically, and I don't want to add another surgery in 1-2 years for just this. In addition, by implanting a "snap" to his skull, the hearing aid will have a direct connection to his skull bone and Manny will "hear the best he has heard in a long time". The confusion is that if I would have known we were going to implant hearing aids, I may have purchased a different brand back on 8/3...and we have 2 weeks left before our 60 day grace period is up...there are many things to consider and consider quickly as Roberson wants to get going to protect his hearing. We also may need to get Dr. Lewin involved as Dr. Roberson needs to lift the flap, and that is her specialty. Of course, if you recall - Dr. Roberson is in Palo Alto, 7 hours from Dr. Lewin in Santa Monica and insurance loooooves that Combined Surgery.
 
With all of that being said, today is the Kick-Off for Uncle Derek's Greater Bucky Open fundraiser for the American Family Children's Hospital. Today we get to deliver toys at the hospital with Bucky and the UW Football players to children at the hospital and to kids getting their daily chemo treatments. Tomorrow is the super fun golf event and Saturday is the UW football game. www.greaterbuckyopen.com In addition, we were invited (with some other families) to a Brewer game by Marcus Hanel and his Koos for Kids events. There were kids who definitely have some struggles there, but there was one boy with a hearing aid implanted in his skull, and another kid who has TE Fistula repair. So, as you can imagine, the mom's don't exactly analyze the game but chat with eachother, which is really nice. Therefore, despite our downhill slide, despite the ongoing decisions and information overload, we are still ok. Manny is thriving in Kindergarten. He earned his white belt in Karate and loves to walk around the house saying Hi-YA! And, he is going to try a hip-hop dance class tonight....why, because he loves to HEAR the music!
 
Special thanks to Jason Helbing for your inspirational email. Your timing was perfect. :)
 
 
 
 
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