I sit in a familiar place...Easter Seals...for Ella's Physical Therapy.  She sits on the floor working hard on her therapy, making the best of what she has...or better put---what she has left.  SMA is relentless as it robs its victims of what they have...that's why the entire SMA Community is so eager to get their child (with SMA) approved for the new treatment drug known as Spinraza.  It's proving, however, to be an uphill battle with insurance companies. Yesterday I spent the entire day with Ella at Lurie's Children's Hospital for her "clinic".  This is where we meet with her team of doctors and therapists every 6 months or so; a team that is dedicated to their patients in so many ways.  Ella's visit went wonderfully.  She's gaining weight, growing, and maturing.  She performed well on her pulmonary tests and completed her first DEXA  Scan (bone density) which set a baseline for her.  The only part of the day that elicited anxiety for El...