Wednesday, May 8, 2013

Muscle clinic marathon!

Clinic days are so long - and muscle clinic days are the epitome of neverending - but it's nice to see everybody all at once and get the bases covered in every aspect of Lucy's care.

We visited with a dietician, OT, PT, took an x-ray, visited with GI, a few others in between, MDA, Dr. Schroth - a mish-mosh of specialties, a blur of names and faces.  The x-ray was for Lucy's spine, which has doubled its curve in a year; from 13 degrees to roughly 26 degrees.  We talked to Dr. Halanski, an orthopedic surgeon, who said that the curvature wasn't anything to address right now, and that part of Lucy's curve progression might have even been positioning during the x-ray, which was a big relief.  We went over the options to correct curvature with him anyway - he was very straighforward and knowledgeable.  Feeling good about having him as Lucy's surgeon in the future, if needed.

Lucy's x-ray also gave us a chance to look more at the lump in her stomach, which hasn't gone away.  Nothing showed again, so the GI suggested an ultrasound... at the end of our very long visit.  We opted to tack it on, rather than re-expose Lucy at our local hospital on a different day.  The radiologist said that the lump may be a lymph node, or a misplaced ovary.  Neither are very bad, apparently.  We'll be waiting for a call back from GI to further discuss the results.

Lucy will also be getting some additional bracing for her arms, which are - and forgive me if this is inaccurate, a degree in physical therapy I do not have - subluxed? at the elbows.  They hyperextend, and a bone nub sticks out where it shouldn't, so we are getting some strappy devices to try to hold it in the correct position.  We also came home with knee immobilizers that Lucy will be wearing while she sleeps, to try to keep her knees from contracting further.

Dr. Schroth likes to hit everything, from wandering eyes to tummy troubles to behavioral issues.  We talked about how Lucy completely rejected the eye gaze, and how she tunes out in general.  Not listening, eye rolling, humming over you while you talk to her - or while anyone around her talks, clamping her eyes shut while someone is trying to talk to her, vocalizing loudly and constantly... and how disciplines or rewards (re: bribery) are not effective in changing this behavior.  Dr. Schroth suggested we take Lucy to a child psychologist.  I am clearly not being effective in helping her to communicate, and have run out of ideas to try to reach her, to motivate her to express herself effectively, so we are going to be looking into this.

Well, I think that's everything in a nutshell.  Thank goodness for the summary they print out at the end of the day, because hardly a thing sticks in my head - especially going in on 4 hours of sleep. (Lucy likes to wake up in the middle of the night before busy days :P)  So glad to be back at home, relaxing!

Lucy trying out some kinesio tape - she was out cold the whole time she was getting taped up.  That's what happens when you wake up at 4am!

Nope.  Not havin' it.  Lucy's out.