Clinic Day

So yesterday was our first muscle clinic in Madison for Lucy.  They only come once a year (thank goodness!), and since it's been a little over a year since her diagnosis, she was due.  Anyone who has been to clinics in Madison knows it is a LONG day, with a blur of faces and information and lots and LOTS of questions.  They have questions - "they" being occupational therapy, physical therapy, rehab, palliative care, dieticians, social work, respiration therapists, and of course, the head honcho - Dr. Schroth.  Some women open their wallets to rows and rows of credit cards; I now have the contact information cards of everyone in the American Families Children's Hospital's directory.

We have questions too, if we can manage to keep our heads straight and spit them out to the right people: are we bracing effectively?  What about stander time?  Is she gaining too much weight?  How aggressive should oral therapy be?  I began to think that a notebook would have been a good idea when they brought in the list of people we were going to see.  Yep, a list, so we could check them off as they came in to evaluate Lucy (and us). 

Our "appointment" was at 8:15.  AM.  We - including Lucy - are not morning people, so she ended up having to take a little snooze, and of course she planned that when the occupational therapist was there; the lady who really would have assessed her ability.  I came to find that it didn't really matter, because just as any other clinic day in Madison, people are coming and going through your room all day.  Lots of times the same people return to tell you one last thing, or ask you another question, or bring you more information or tools.

It was a very productive visit though - and since we didn't leave until 3pm or so, it should have been!  Lucy had a blood draw for labs from the world-famous Noni, or as I like to call her - the Blood Whisperer.  You know the saying, "you can't get blood from a stone?"  Noni could.  And fast.  It still wasn't fun, but it was over quickly and soon forgotten.  I also changed Lucy's mic-key button for the first time myself, which was far less painful (for me) than I had imagined, and a mere annoyance for Lucy.  Her AFOs were modified to be more effective, she had an xray for her hips and general alignment so they can now chart her spine curvature and her hips for dislocation, and everyone took the time to tell her how cute she was - which I think was her favorite part.  Lucy absolutely ADORES being fawned over; when she sees a smile on someone else or hears the words "cute" or "pretty," the person lavishing attention on her is sure to be rewarded with her shining grin.

Lucy is doing well.  Her movement is still pretty fair, her joints are limber enough, she's perfect as far as weight for a SMA child... and most of all, she's happy.  So, in your face pulmonologist who blandly told us that Lucy would have no quality of life and we would only be selfishly prolonging the inevitable in seeking anything other than end-of-life care for our daughter.  I don't know what the future holds in store for Lucy, but so far she's getting all gold stars.