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GBO, Genetics, Kindness Kounts, Big News, MANNY TURNS 6!

posted Oct 8, 2012, 12:46 PM by Manny Wilke   [ updated Oct 8, 2012, 6:28 PM ]
Life has been busy.
 
The Greater Bucky Open was a great success. I got to help bring smiles to children getting their chemo treatments with Bucky, UW football players, and lots of toys. It also brings me some great perspective. While the final numbers are not in, this 16th annual GBO may have put us over the $200k in total donations for the American Family Children's Hospital which is really incredible if you think the first year was 12 golfers raising $50. Way to go, Uncle D!
 
Manny himself had a UW Geneticists appointment the next week. We haven't been there in a few years so I was excited to see them be excited about his progress :)  I forgot about his 4" thick UW medical file from birth. Some of his quirks have subsided, some remain. He continues to be very untypical of specific syndromes which he overlaps between. They referred us to a Pulmonologist to check his lung - coughing issues. That is a 'gist' we haven't visited before. We agreed to participate in a Vertebral study
and we both had to give blood. That boy is such a trooper - what 5 year old kid agrees to getting his blood taken for "nothing"? The study is privately funded and they will spend $3000 analyzing our blood which will help other children of the future -  so it was hard to say no.
 
He has been doing well at school despite one morning playground situation before school. An older girl wouldn't leave him alone about his ears. I could see from afar that something was going on. I walked over to Manny to say goodbye and see what the situation was and it was heartbreaking. I did my best to educate, stay positive, redirect as I have been doing for the past 6 years...but nothing worked. "My ears are perfect - what's wrong with yours?" over and over and over again. Manny was so excited to be leader that day and as the situation continued to unfold I could feel his body just shrinking in sadness while not totally understanding...he thinks his big boy ears are the bomb...because they are. Granted, she may have had issues of her own but Manny would never understand that. Later that night at karate I read a posted quote on the wall "Kindness is a language where the deaf can hear and the blind can see." Why can't everyone figure that out?
 
The big news is that I'm waiting to hear about his possible next surgery. It could be as soon as November 5th...which means we'd have to fly out in 3 weeks...and we'd be gone for 12 days....now up to 86 days in California but who is counting. We have to make several big medical decisions, so I am trying to talk to other moms and do some research. The goal is to close the right ear canal to stop the infection. We have to decided if we are going to place metal abutments/screws into his head for his hearing aid to snap onto instead of wearing the softband headband. There are many + and -  about it, so we are trying to weigh it all out. 
 
On a positive note, this weekend was Manny's 6th birthday and we celebrated all weekend long with a school party, friend karate party and family party!
 
PS - Actually, the BIG NEWS is that Manny lost his first 2 teeth! DUH!
 
Photos updated - Surgery 8-8-12
 
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