Wednesday with Raffie

We were a little bored today so we went shopping… in the hospital gift shop.  Which by the way is quite a nice shop for a hospital.  There was a giraffe there with Wendy’s name on it.  Wendy is Sideways Sally’s gran who will be two soon.  Wendy luvs giraffes, and since the Skipper has giraffe legs they are kinda the same!   We named the giraffe “Raffie.”

Another awesome thing we did today was go on the facebook page for Marfan Syndrome.  It is a collection of people with many different experiences, all Marfan related.  We learned of someone else who also has intestinal bleeding problems, and another person who is 70 with mostly spine and eye problems, but is the soul survivor  of a family of seven.    It is so comforting to hear other’s stories and receive many more words of encouragement, “Sail on Sailor” was a favorite.

Other than that, Hershey spent the day impersonating a pin cushion as the medical team continue to monitor hemoglobin levels and clotting rates of warfarin (INR).  It’s only a matter of time till he’s good to go, depending on therapeutic levels of INR.

Soooo….. here’s hoping for the best!!  from Raffe and friends everywhere.  We luv you Skipper and can’t wait till you’re home.

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