semi-annual trip to...

Panera Bread Vanderbilt Children's.  Asher has his last appointment with the Neonatal Follow-Up Clinic tomorrow.  They will do some sort of standardized test and talk to us about his delays.  It's really a formality at this point, but I'm thankful we've been able to see them the last three years, especially early on.  They gave us some good advice in regard to skin issues that no one else had really addressed.  I'm sure it's also helpful to them to be able to follow up with their graduates.  Not to mention, they reimburse us for gas.  Seriously!

One appointment we won't be going to is Genetics.  It's scheduled for next week, but after tomorrow's visit I'm going to call and cancel.  Now that we have our diagnosis, the clinic really isn't helpful for us.  We know far more about CFC than they do.  We went for a visit after Asher had been diagnosed, like good and faithful patients, and it was very disappointing.  They basically asked us if we had any questions and sent us away with a printout about the syndrome.

Um.

Please don't get me wrong.  I'm not hating on the clinic in general, or the doctor or counselors - it's just a waste of time for us.  If they were interested in doing some sort of research study, I'd be all about it.  Or even if they would schedule our appointment on a day we're already there, I'd suck it up and go.  But I'm not driving all the way to Nashville specifically for that one appointment so that I can sit in the waiting room for over an hour (they have the worst wait time of all the docs we see) only to have them ask me if I have any questions about a syndrome they know next-to-nothing about, except that it occurs in the BRAF, MEK1, or MEK2 gene and is spontaneous.  And before you ask, yes, I've tried to get his appointment moved, but unfortunately his doctor works clinic days that are opposite of Asher's other appointments (like tomorrow's).

So there.  My confession.