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Showing posts from April, 2010

Good Day Sunshine

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Good day sunshine Good day sunshine Good day sunshine I need to laugh, and when the sun is out I've got something I can laugh about I feel good, in a special way I'm in love and it's a sunny day Good day sunshine Good day sunshine Good day sunshine Waking up to a sunny day should have been the first indication that the girls' treatment was going to be ok.  You see we have had a cool spring this year with only the occassional warm, sunny day and this day looked to be a good one.  We woke the kids up early with the goal to reach CHOP by 10.  I worried the girls might be a bit hesitant, but I quickly realized this would not be a concern when Maddie screamed out a "Yeah!" when I told her it was the day for the first treatment.  I don't think Genzyme needs to make commercials for Myozyme, but if they do I have a spokesperson in mind. On the way down the PA Turnpike we received a call from the Day Medicine nurse making sure the "Crowley girl

Wacky Wednesdays

WACKY: absurdly or amusingly eccentric or irrational. Here we are two nights away from the girls' first Myozyme treatment on Wednesday, April 28th.  From now on they will receive treatments every other week...forever.  Yes, that's forever with a capital F or as my Latin speaking friends would say "ad infinitum".  While we are tentative to take this next step; we are looking forward to what awaits us.  You see CHOP has developed creative ways to make their Day Medicine clinic (where the treatments will be held) a positive and fun environment.  There is Musical Monday, Tiara Thursday, and for us Wacky Wednesday .  So starting this Wednesday we plan to have the girls wear, share, act, sing, watch or just generally do something wacky during their treatment day to maintain a fun, upbeat spirit. Now I know a thing or two about being wacky.  In fact, I have been both complimented for being wacky and punished for being wacky.  The latter mostly occurred back at St. Domi

California Girls

Well East coast girls are hip I really dig those styles they wear And the Southern girls with the way they talk They knock me out when I'm down there I wish they all could be California I wish they all could be California I wish they all could be California girls They were born in the Golden State.  One in sunny SoCal and the other in foggy NorCal.  Both heard The Beach Boys belting out this classic tune on the way to the beach or to "The City" (aka San Francisco).  They didn't need to wish they could be California girls, it came with the territory.  No one could predict that one day they would be one of those hip East coast girls with the syles they wear or Southern girls with the way they talk , but serendipity placed them on that path. Dad's work brought them to the East coast, but Pompe unexpectedly connected them to the area like no other.  First to the Children's Hospital of Philadelphia (CHOP) and their wonderful team, to Genzyme and their a