Specialist Buffet

This week we have our Spina Bifida clinic appointment (they accept VACTERL patients too).  He sees 5 specialists all at once.  It is bound to be a multi-dread week.  First of all, the only appointment we could get was on Jenn’s birthday, ugh.  Two and three are more serious matters.


They took hip x-rays at his last appointment.  He gate is getting more unsteady and he has been falling a lot.  His scoliosis is probably getting worse as is his hip alignment is not ideal.  Hopefully neither will require some mid-evil intervention.


Lastly, his neurogenic <sp?> bladder.  Thus far we have gotten away with not catheterizing him.  But we are concerned our luck may be running out.  He has nearly 90% urinary continence.  But the 10% is of concern, especially as he approaches send grade.  His occasional accidents have gone unnoticed at school thus far, but I am sure our luck will not hold out another year.


Tuesday=Bluesday…more later.

4 comments on “Specialist Buffet

  1. Ugh. Ugh ugh ugh! UGH!

    That’s a rough week ahead. On one hand it’s so freaking awesome you can see all the specialists together (Why should only the spina bifida folks get all the fun?), but stinks that you get all the results at the same time. I too am waiting for the day they check out the x-ray and say bracing or surgery and they look at the urodynamics eval and say cathing. Like you said, it feels like you’re “getting away” with it when you leave with just another appointment to schedule and not something more UGH!

    Good thoughts, prayers, and such headed your way this week.

    (Happy birthday!)

    – becca

  2. lol…”Why should only the spina bifida folks get all the fun?”

    I guess that is one of the “advantages” of having a more common malady.

    The clinic is great though…the doctors actually talk with each other. Saves a lot on giving “the history.”

  3. I understand! I loved clinic because the team is watching your progress, not to mention the time saver. We are praying all goes well.

  4. Okay, I gotta figure out how to get hooked up with the Spina Bifida crowd. Does tethered cord count? Is it good enough? I want in! I want spina bifida!

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