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It was Like… Magic (Chapter 1)

December 12, 2009


It was the Monday before Thanksgiving and we were off to yet another appointment with Lucy’s GI.  It was a very productive appointment in the sense that we discussed some “what if” scenarios with her doc for the first time in Lucy’s life.  For most people, these types of discussions are not what you want to have with your doctor; but for Drew and I it was a relief to hear what his thoughts were.  He shared with us some of the concerns he has for Lucy and what we need to be looking for that could possibly indicate trouble. Lucy’s motility appears to be slowing, but she is continuing to gain. Weight gain is so important and we are going to continue to keep monitoring this.  He agreed to pull her J-tube and have it replaced with a Mic-Key G-button.  We met with the GI nurse practitioner just after her GI appointment and made the switch right there in the office.  After a frantic search for the correct size(she went from an 18fr long tube to a 14fr mic-key for all you G-tube experts out there, mainly because that was the only small size they had in the office), a quick tutorial on how to change her button at home, and assisting Drew from fainting to the ground(he doesn’t do well with anything bloody or seeing someone in pain, God bless him for trying) we were on our way.


Lucy’s new Mic-Key not to be confused with The Mickey:)


Tuesday afternoon we could be found at our Pediatrician's office waiting for round two of the H1N1 vaccine.  It is a crazy busy time of year in any pediatricians office, but ours is an independent and she had all of her rooms full with other patients not to mention our room full with our four kiddos.  After waiting for over an hour trying my best to distract the kids from what was about to happen, all four kids took their shot in stride.  I think that only three out of four left in tears, not too bad.  As usual, Lucy reacted with a fever and general irritability afterwards.  I was actually looking forward to the drive the next day because I knew that she would sleep for most of the day.



The next twenty-four hours were a blur of suitcases, plies of clothes, shoes, medical supplies, strollers, Lucy’s walker and wheelchair, coloring books and craft supplies, DVD’s, hidden surprises for when those desperate times call for serious bribery, snacks, remembering to return all of  the library books(we only forgot to return one), tracking Lucy’s new tube supplies with UPS which incidentally arrived after noon on Wednesday and needed to be reshipped to Disney on Monday, sharing secret glances with my husband who knew that  at any moment I was going to blow it and say something about going to Disney, and all of the other stuff one needs to do in general so that they can leave their house for a week and a half. 


When I look back on our trip I am in awe of how we were able to plan, organize, pack, and get there and back all without forgetting something or loosing our sanity.  Planning for any time away from home with our family is never easy, but add to that a 1,000 plus mile drive and a week in Disney World and you increase the difficulty by well…a lot!  The weeks of planning, organizing, packing, and secret keeping paid off, it was like…magic how we were able to do it and enjoy it all!  

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