Sunday, January 12, 2014

2014 - The Beginning, Sort of

For the last 9 months we have been anticipating Henry's big trip to Baltimore this coming summer.  I guess now that the year on the calendar matches, it is starting to feel like it is just around the corner, that 5 months will pass in no time.  This has my stomach in knots.  Ugh. Yeah!  Ugh.
   We currently have Henry's rotationplasty with Dr. Standard scheduled for June 18, 2014.  It will be his first surgery, and a mighty big one at that.  My baby will be under for 6-8 hours.  They will for all intents and purposes remove his left leg and reattach it, backwards.  This is no small thing.  This is scary, and yes, it is also exciting.  Right now, I feel much more scared.  Did you read the part about that this is my baby we are talking about?  Wait, scratch that, terrified.
   No, Henry is not a baby anymore.  A month prior to the day in discussion Henry will turn 5.  In fact, trying to explain all of this to him and how he will react when he sees his leg afterwards is part of what scares me.  Will he take it with his usual positive attitude and smile?  Or will this change take away his comfort in his self-identity with a leg that is different already?  I can only pray that my confidence that my husband and I are making the right decision to give Henry the best quality of life long term is not misplaced.
  We did not make this decision lightly.  What is exciting about this procedure is the benefits we believe it will offer Henry both short term and long term.  We have carefully chosen a doctor whom is a specialist in PFFD (or CFD) and who has successfully performed this surgery.  Dr. Standard took the time to give us options for helping Henry, and he helped us understand how rotationplasty is the answer to our biggest question.  It is not a surgery intended to make our prosthesisists' job easier in helping Henry walk, but rather will give him improved gait and long term hip stability.  Long term I know is no guarantee, but this is the best bet and our doctor has confidence Henry will have it.
   Now to keep my focus on that. Ha!  Did I mention my stomach is in knots?
   With only 5 months left, it is time to iron out the details.  As we do that, I will tell you the real beginning of this journey, introduce you to Henry, and tell you all I know about PFFD and FH and rotationplasty.  OK, 2014, let's get this journey started.

1 comment:

  1. And the work begins. My prayers are with you. Keep us informed on the fundraisers.