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<Oye>, Bleep Bleep, Snap Day

posted Feb 6, 2013, 10:02 AM by Manny Wilke   [ updated Feb 7, 2013, 12:06 PM ]
We met with our local ENT last week and he confirmed that Manny still has a 30% marginal perforation in his ear drum. Because it is "marginal" the skin won't reconnect on it's own and will require surgery to repair. My local ENT and Dr. Roberson agreed that it could probably be corrected locally at UW. I expressed my concern of having more surgery, fixing the ear drum, waiting 8+ weeks to heal (mind you, we still have to keep it completely dry) and then the fear of going swimming once and it will tear open again or have infection...miss yet another summer...and the endless cycle just will never stop. While it did take several hours to create the ear canal and it has been relatively healthy, it just seems to have had a non-stop small infection now for 6+ months. This Left ear has now lost all hearing so I am really debating just wanting to close it up and be totally done for many years, as we did in November with the Right ear. From what I gather, besides a major surgery of "undoing" everything (versus only a 2 hour ear drum repair), the only real perk of keeping it open on a non-hearing ear is for aesthetic purposes. But, I'm over that aspect now. While I thought the August was the last surgery .... then the November surgery was to be the last surgery.... we now still have more to go. We go to UW next week for a consult and then we'll plan our next steps whenever/wherever that may be! Probably soon though, so we can try to recover prior to summer. <Oye>
 
The other day I overheard hotel employees talking about the need for getting some blinking lights installed in a guest room to comply with ADA laws. If you are deaf/hard of hearing, you cannot hear an alarm clock nor can you hear the fire alarm. Guest rooms need to have strobe lights that blink and flash in hopes that the guest will awaken. The thought of Manny not waking up to these makes me sick. Regardless, I overheard one employee say to the next...."We need to get handicapped rooms installed for them deaf people". Pause... Deep Breath.... Them. Deaf. People. Really? I use every opportunity I can for a teaching opportunity.  At the end of the conversation, I politely said without mentioning anything about my son, "I am working on a new park project in Beaver Dam for children of all abilities and have learned about the proper terms you should use. It is ever changing so it's hard to sometimes keep up with the proper terms. But, it is definitely better to use Accessible not Handicapped and Hearing Impaired or Deaf & Hard of Hearing not Them Deaf People." Bleep. Bleep.
 
On a positive note, yesterday was February 5th, exactly 3 months after his November 5th surgery. We needed to wait 3 months for his Snaps (metal abutment screwed into his head) to heal and osseointegrate (~cement into~) into his skull. Manny can now snap his hearing aids right into the Snaps on his skull, no longer needing the headband that we've been using for 6.5 years. Manny has been counting down the days until Snap day. He even asked me when his big party was going to be! Ummmm.....there isn't one?! I had to explain to him that while it is very exciting for us, for him, and that we'd definitely celebrate - we also didn't want to make his brothers feel badly because they don't have Snaps - because of course, everyone wants Snaps! On Snap Day Eve, Manny made hand written cards before bed for each of us - Nate, me, Eli and Abe. Each one was customized. "To Abe. This is your special day. Love, Manny" and included some of his personal candy stash (Swedish Fish) in a baggie. Manny woke up early, put the notes by everyone's pillows just like the Tooth Fairy magically does. Just the thought of it brings tears to my eyes. With everything he's been through, he wanted to make sure we each felt special on Snap Day. We did bring little cupcakes to school, and the kids all sang "Happy Snap Day" instead of Happy Birthday to Manny. The music teacher even taught the Kindergartners to "snap" on the word Snap! Manny came home wearing a Happy Snap Day birthday crown. I think I'm going to return back to Kindergarten. Everyone is so kind and life is so simple. These Kindergarteners and Them Deaf People could teach some adults a thing or two.

Photos of Snap Day uploaded at: Photos - surgery 11-5-12
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