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Countdown begins, BOD

posted Jul 23, 2012, 8:53 AM by Manny Wilke   [ updated Jul 24, 2012, 8:46 AM ]
Well, we are T-2 weeks now until we leave again for Manny's 5th surgery in California. This surgery will take place in Los Angeles for the first time. The first 4 surgeries took place in Palo Alto, CA about 7 hours away, but then our follow up was with Dr Lewin in LA. I got out the suitcase last night so I could start thinking about what to pack for all of us. Got out Manny's velcro and button down surgery shirts since he cannot put on anything over his head, his skull caps, etc.I have a big surgery bucket in his closet filled of who knows what. This surgery will be the Stage 2 of his outer ear reconstruction - nothing to do with hearing. Dr Lewin may replace both impants, regraft some skin, help his damaged scalp, fix his stenosis (narrowing of ear canal), etc. I can't WAIT to see her! We have been in continual touch, not only about his ears, but about life in general. No words can explain how amazing this woman is!
Manny's Left ear which has never given us problems - now looks infected, so we are taking him to see Dr Danny (ENT) today. His Right ear was infected last week due to our one last swimming hoor-rah....I knew that despite plugging and banding his ears, he might get an infection due to his preforated ear drum. But, it was a baseball swim party at my dad's house during a Waunakee baseball tournament and sometimes, you just need to say "oh well - go have a blast!" as he has only swam a couple times in the last 18 months. He misses out on so much. With that being said, I need to make sure there is no infection prior to surgery, so it's important to get it taken care of ASAP. Tomorrow, he has his surgery pre-op with our local pediatrician. Then, of course, get all the medical paperwork docs, insurance, flights, car, hotel info organized. Next week we pick up his new hearing aids. Oops, I mean "processors" - apparently "hearing aids" is no longer appropriate. Who knew?! Sometimes the preparation feels never ending, but since we have done it so many times, it just becomes routine. This time, the whole family is coming out for the entire time, so I feel much less stressed - perhaps it is because I am not coordinating the whereabouts of my other kids each day we are gone - not to mention the emotion turmoil that comes into play of leaving your children.
Melissa Tumblin, mother and former nurse, started the Microtia/Atresia support facebook site, which then lead to her new website and now is in the process of becoming a non-profit. Melissa has a daughter with microtia/atresia and wanted to create an organized resource for parents with regards to hearing aids, surgeries, support, you name it. I just wish I had it when Manny was born and as we were headed into surgeries; while I talked to a few parents over the phone, I basically had to pave my own way. She is amazing was recently published in multiple articles and has the "ear" of many top surgeons, audiologists, and hearing aid companies :). I was extremely honored when she called me last week and asked me to be on her Board of Directors for her non-profit.