As a teacher I've often heard and said that kids "grow up" so much over the summer.  And they do. Summer provides a open forum for play, which as we all know, is the best way to learn.  It also allows for physical activity which strengthens the body.  Skills that require coordination can be practiced if not mastered over the summer.  Not to mention time for relaxing; those lazy summer days really do serve a purpose--to relax and recharge. Kids also complain.  While there is a plethora of things they complain about there's one complaint that all kids end up engaging in...growing pains.  They often come at night, when the body is seemingly in rest but deep inside it's hard at work. Hard at work growing.  Hard at work taking all the days' activities and sorting through...finding value in one aspect and no value in another.  Muscles regenerate from the stress of play.  They strain and grow leaving their owner in a deep seated, dull, achy p...

We all know that life "has its bumps".  For Ella, that is a reality she lives with every single day.  We are so fortunate that so many people and several organizations have stepped forward to help our family.  We honestly wouldn't be where we are had it not been for the care, dedication, and pure kindness that has surrounded us.  Ella is six years old.  She LOVES to play with her brother and sister, with her friends, and with her neighbors.  Of course, kids being kids, they run and jump and play all over the yard and the neighborhood. Ella does everything she can to keep up with them...and does a great job of it! We have noticed that as she cruises around the front and back yard areas she is pretty good at changing her pathways, thereby not wearing muddy paths in either of those places . While this has always been the case, it is not so for the pathway she has forged allowing her to g o ba ck and forth between  the front and back yards ; t h e la...

They say, "Kids grow so quickly."  And that's true. They say, "Time flies." And it does. They say, "Life's not fair." And so be it. They say, "Kids are resilient." And they do live up to that. "Kids grow so quickly."   Ella turned 6 years old today (June 10, 2016).  We celebrated early in the morning since she couldn't stand to wait anymore.  The five of us (and Sasa) sat around the kitchen table and helped Ella open her presents from Ava, Henry, and Mommy/Daddy.  Her eyes lit up with each present while her faced beamed with delight.  Following the "opening of the presents" the "playing with the presents" ensued.  Voices of three children playing filled the house (literally).  A perfect start to Ella's birthday. "Time flies."   Six years ago today Ella came into the world.  She was a VBAC2 baby (Ava & Henry were both C-sections...Ella was natural). After a long labor a...

Most of you who know us, know that our dog, Sasa (a Vizsla ), is a very important member of our family. I bought her from a breeder when I lived downtown Chicago with my sister, Anne. Sasa will always be my first "baby"...she was with me when I dated Michael and then married him; she was with us through the births of our three incredible children; and she was with us when Ella was diagnosed with Spinal Muscular Atrophy. She's still with us now. She's been with us through the ups and downs of life, and has remained the most amazingly loyal, loving and playful dog that I ever could have imagined owning. We always knew that we wanted to get another Vizsla puppy before Sasa's time with us ended. We wanted to have "overlap" time between the two dogs (and we've been told by many people, including Sasa's vet, that this would be beneficial not only for us, but also for Sasa and the new puppy). So o ur plan was to get a male Vizsla puppy...

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...