Monday, April 26, 2010

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. Dominic Savio where Sister Superior just didn't seem to care for kids being wacky.  Who knew?  For the record, my bride is not new to wackiness either so our joint experience has provided us with a few ideas.  And fortunately we have our fair share of friends and family who also fall into the wacky category, but for their sake I won't name names.  Those who are smiling now, you know who you are.

So nearly a year after we took Maddie to that first doctor's appointment, five months after her diagnosis, and three months after Emma's diagnosis we are taking that next step in our New Adventure.   While I know we are blessed that there is a treatment which will stabilize the girls' situation, I sit here with butterflies in my stomach and a prayer that somehow I could still take it all away before they feel that first needle prick and the rush of the medicine entering their blood stream. 

I am not sure what our family will feel at that very moment, but am sure there will be a few smiles and a few tears.  I am also sure that somehow we will remember that it is Wednesday and as such, we will find a way to be Wacky.

All the best and many thanks,
Matt

7 comments:

  1. I have something for the girls but I will be out sick today! I hope everything goes well tomorrow and I will be thinking of all of you! Make sure Maddie stops by when she can later this week to receive what I had intended to be a little treat for them for tomorrow!
    Have a wacky Wednesday!!!
    Miss DeNicolo

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  2. Sending hugs and positive energy your way!
    From now on, I will no longer refer to Wednesdays as hump days but rather Wacky Wednesdays!
    Love,
    One of your wacky neighbors - Mrs. R.

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  3. I think a hat would be appropriate.

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  4. Good Luck tomorrow! I can tell you from experience...the first few infusions will be a little scarey, new things always are. Be calm and everything will go fine. You need to think of it as a CELEBRATION! The first day of the rest of your life, be strong! Soon your treatments will become routine and you will find that she will be stronger and happier knowing that she has a bright furture ahead of her! On my first infusion day my doctor said to me that when children receive their first infusion, they have a "party" for them including decorations and balloons....so I asked him "where are my balloons??" He just laughed. Good luck, I know that everything will be fine, you have many people who care about you and will be saying a special prayer for you.

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  5. Special thoughts and well wishes from those Wacky California Crowley's. We all wish that we could be there with you tomorrow and every day. Can't wait to hear all about it.
    All for two, and two for all!

    Love you guys,
    Bill

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  6. Our family above will be in the room with the girls Wednesday making everything go smoothly, and I'm sure just a bit wacky as well. We love you all and will be sending happy thoughts!

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  7. Next year we will have an offense named Maddie Crowley

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