Thursday, June 2, 2016

Wilmington Adventures....

Today's appointments were with our newest doctors at Numours DuPont Pediatric Hospital in Wilmington, Delaware.  Now, before you all get your knickers in a twist, this hospital is just 20 miles past CHOP, so it's not such a stretch for us to get there.

We came down late last night to our home-away-from-home, and left at about 10:30 AM for a 1 PM appointment.  Good idea, actually, since despite the distance being only about 40 miles, we arrived at 11:45.

The new neurologist did a couple of new things:  She shifted Babygirls's current migraine prevention medication from once daily short acting to a 24-hour formulation at a higher dose, and she put her foot down and insisted that Babygirl become religious about her fluid intake, and begin yoga three times weekly.

The pain management specialist did an evaluation, including the now-familiar depression and anxiety screening.  Then we spent nearly two hours with a pain management occupational therapy specialist, who assessed Babygirl's general coping strategies, posture, and overall levels of satifaction/frustration with her life/pain.

Then we drove 'home' through rush hour traffic through Wilmington and Philadelphia.

It was, in total, exhausting.

The only simple thing was the parking.  And lunch. Lunch was easy.

We aren't sure what the next step will be.  For sure we will be going back in August for another round of Botox. The neurologist feels there is benefit in continuing even in the face of failure thus far. She feels that relieving the ongoing secondary muscle stress that must necessarily be occuring as a result of Babygirl's daily pain is still of some benefit even if there is no obvious relief of the headaches.  The team will determine if we need to come down for weekly/biweekly sessions for pain management training or whether that could be done somewhere closer or not. Once we have some information about follow up we will schedule Nephrology at CHOP.


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