This past Saturday we were blessed beyond belief by the members of our incredible prayer line at our church, St. Timothy Lutheran. They wanted to do something special for our family, so they ended up purchasing tickets for us to go see the Broadway play, Beauty and the Beast , at the Cadillac Palace Theatre downtown Chicago, followed by dinner at the Rainforest Café. They also bought beautiful costumes for the kids to wear to the show, hired a limo driver (to drive our car so that we could accommodate Ella's power wheelchair), and gave us some extra spending money for the kids to buy souvenirs. We cannot even begin to express our gratitude to the prayer line members for this truly magical day! Our entire family had such a wonderful time!! I even cried at the end of the show... Beauty and the Beast was my absolute favorite Disney movie as a child :) The only thing that the prayer line members asked for in return was that we take lots of pictures to share...no problem!!!! Th...

She sat at the bottom of the basement stairs, waiting for me to come and bring her upstairs.  As I walk each step the thoughts of what needs to be done always runs through my mind---what is she wearing, is her feed running, is her TSLO on, are her AFO's on, does she have pants, shorts, dress, what angle is she positioned in as she waits??  All these questions help prepare me for lifting her as safely, gently, and effectively as possible.   I reach the end of the stairs and she did her little "jumpy dance" in anticipation of being whisked away.  I answered all the questions in my mind and feeling prepared and ready for the lift-off I commenced in the routine.  I squatted next to her chair and made the necessary movements to be able to scoop her up out of the wheelchair.  This "scooping" approach to moving her is basically getting my two arms under her legs at the knee and supporting her back, neck and head with the other arm as I lift.  Sometimes sh...

There's a presence of trepidation that surrounds our days.  A feeling that pain will be lurking around every corner.  The expectation that everything will be all right eludes Ella.  She knows she must be carried, moved, and repositioned throughout the day and night.  She also knows that for much of her life pain has been present.  And not only present but increasing in prevalence and severity.  Naturally she expects that any movement involving another person will result in discomfort---if not full-blown pain.  Upon the removal of her cast we experienced the deafening cries as we carried her from the examination room (where the cast was removed) to the x-ray room.  These particular x-rays required her legs to be in certain positions that would allow viewpoints that would otherwise have not been attainable while in the cast---which meant that repositioning must take place.  The doctor's office is a relatively small space within a larger bui...