Mayo Moments

Wednesday, 4 July 2012

Follow Up appointment

Well today's appointment kinda stunk.

We waited so long for today - 7 months!, gave up Leah's chance to go to the cottage with the family, pinned our hopes on getting some sort of new information, but nothing, nada, zip, zero, bubkis!

Basically we are back to square one, the neurologist is stumped, he is setting up appointments with a Paediatric Cardiologist, an ultrasound of her heart (echocardiogram), a week's hospital stay for a VEEG-Video EEG Monitoring, another kick at the can with a holter monitor, and possibly some Autonomic Testing to try and induce an episode.  When I asked how soon ANY of this was going to occur, he replied MONTHS and to schedule our next appointment for after all the tests and appointments were done.

So basically, the plan is this, wait, wait, wait, and wait some more.  Have a test.  Wait a bunch more, have another test, wait a whole lot more.  Meet with the Cardiologist to tell him/her everything we have told all the other doctors and specialists, schedule some more tests.  Wait, wait, wait, wait some more.  Have another test or two.  Make an appointment, wait for 3-6 more months, have the appointment.  All in all it will probably be another year at least before we see him again.

This is why it is so SO important that we get Leah to the Mayo Clinic.  In one week she will see doctors and specialists from a variety of disciplines, she will be tested in so many different ways, results read and acted on immediately, our scheduled appointments adjusted as needed to see who we have to see while we are there.  In 8+/- days we can accomplish what it will take months or years to accomplish here!

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