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Showing posts from August, 2010

You Never Give Me Your Money / I've Got A Golden Ticket

Yesterday we received a letter from our insurance company detailing the costs for last month's Lumizyme treatments.  As I looked down at the amount we owe now that we've met our deductible, I reached for my insurance card, grabbed Maddie's hand, and became Grandpa Joe from Willy Wonka and the Chocolate Factory dancing and singing away to... I never thought my life could be Anything but catastrophe But suddenly I begin to see A bit of good luck for me 'Cause I've got a golden ticket I've got a golden twinkle in my eye I never had a chance to shine Never a happy song to sing But suddenly half the world is mine What an amazing thing 'Cause I've got a golden ticket I've got a golden sun up in the sky And then I started to wonder what the insurance claims specialist must think when they receive yet another invoice from CHOP for those darn Crowley girls.  I imagine it goes something like this... You never give me your money You only gi

The Fork in the Road

The AMDA publishes a regular newsletter and contacted us for an article about our experience. Many of you already know the story, but I thought you might be interested. As a younger man I drove the finely paved Los Angeles freeways with ease. Like millions of others, I merged in and out of traffic, easily transferring from one on-ramp to the next at a speed only matched by the pace of city life. Everyone around seemed to follow the same path, eyes on the road, never stop to look around, and never look back. 
 
 Every so often I would notice a strange sight at a fork in the road. A car would have crashed right into the divider between one freeway and another. Why did this happen? Was it because the person was not paying attention, were not sure which direction to go, or were they frozen when forced to make a choice they weren’t prepared for? Whatever the reason I admit I always drove by with a bit of confusion and a bit of humor. After all, doesn’t everyone know which directi

California Dreaming

All the leaves are brown, And the sky is grey, I've been for a walk, On a winter's day I'd be safe and warm, If I was in L.A., California Dreamin' On such a winter's day Last Sunday, Emma boarded a plane to Sunny California with my sister and niece. She is having a great time enjoying the So Cal beaches, great Mexican food, San Diego, shopping, Los Angeles, In-N-Out Burger, Santa Barbara, and most important...family. On Tuesday she'll take her first flight alone and be home just in time for treatment. On August 1st last year we had just returned home from two great weeks in California topped off by my nephew's wedding in Santa Barbara. To remember the trip I sat down with Donna and created a video to share some great photos from our vacation. This was before we knew anything about muscle biopsies, genetic testing, Pompe disease, or Myozyme. It was also before this blog, our wonderful doctors, and the love and support of many friends. Yes