One Step Forward, Two Steps Back


Well today was the big day.  Today we started cathing.  Like many unpleasant things in life, the dread of the thing was worse than the thing itself.  One thing became abundantly clear as we began, we are extremely lucky.  Because Ethan is older, we were able to reason/bribe him.  While he does not “like” the procedure, he patiently endures it. 

 

I am not really sure how this will impact our lives.  For now we are measuring our lives in 4 hour increments.  Thankfully we do not have to cath him while he is asleep.  I don’t do well on little sleep.

 

I hope to blog a bit more now that we have passed this “milestone.”  The last two weeks, I have been paralyzed with dread.  Now at least the anticipation is over.  Now it is just part of the routine.

 

As a side note, Ethan is now old enough to have the surgery that would allow him to give himself an enema…well not really an enema…more of a system flush.  No rush on this front.  We are going to wait until he asks to have the surgery?  Why would he ask?  Privacy mostly.  The surgery is laparoscopic and only requires a 3 day stay. 

 

…piece of cake.

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One comment on “One Step Forward, Two Steps Back

  1. Lucy will have the Malone surgery in May – along with the colostomy pull-through. They might give her a mitroffanoff, too.

    A 15 hour surgery. GULP.

    For now she is holding a piece of paper and pretending it to be a banjo.

    I like your “live for today” thing. Love it. Because if I think about the surgery I will have an aneurism.

    So I will laugh at her playing the banjo. 🙂

    I am glad cathing is going better than expected! It is depressing at first – hell, it’s still kind of depressing. But the longer you do it the easier it gets.

    I know those times are coming – when Lucy asks why she’s different or begs us not to put her on the “disabled” league. She’s 3.5 now and doesn’t even notice she’s the only one in her peer group still in diapers. Why can’t she stay this oblivious?

    Ethan sounds like a fantastic kid.

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