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...

The simplicity of the child often surpasses the complexities of the adult.   Henry sits in church just about every Sunday.  Much of time he is occupied in his own little world which occasionally gets interrupted by Ava and/or Ella.  Some of the time he tries to follow along yet his reading level doesn't quite cut it quite yet. He sings a few songs by heart, but only when his heart is in that place.  And the Lord's Prayer--he recites faithfully. Not too bad, I'd say, for a first grader.  Not bad, I'd say, for a young boy who can't sit still for more than five minutes (unless, of course, he's on a screen--which, by the way, has been revoked for an undetermined amount of time for all three kids.  Maybe that's another blog post).  Not too bad, I'd say, for a boy growing up with both an older and younger sister; both of whom can be a handful for Henry to stand up against. Henry's an affectionate person.  He's a sensitive to the world around hi...

The calls for fairness abound since Ella's surgery.   She is realizing and expressing her frustration associated with the confining nature of not only her hip surgery, but with SMA in general.  Much too much for a five-and-a half year old to have to endure. Cries of "It's not fair" have resonated throughout the house.  And she's right...it isn't fair. Before the surgery, Ella had never really claimed that life was unfair.  She gracefully accepted her limitations and often astounded us at her resilience, adaptive nature, and positive outlook on life.  When things seemingly were out of her reach she suggested a way to accomplish her goal in a modified way.  She has taught us that if you simply step back, take a moment to see the situation for what it is, take what you already have, and modify it to allow her access--then she can participate.  One of our goals in this healing process is for her to fully return to that inspired and wise child. ...

And so it continues... Ella is home.  By 7:40 in the morning it's just the two of us, Daddy & Ella.  She's making great progress as her pain has subsided and her spirits have grown.  We've embarked on a joint effort to establish some kind of routine and so far it's working well. Navigating a "Hip Spica Cast" is not without its challenges.  Everything we do is done in slow motion.  The name of the game is "slow and gentle".  From combing her hair in the morning to re-positioning her at night...slow and gentle. One area that has been undoubtedly challenging is our nights.  We have had three nurses since November of 2015 and are in the process of getting a fourth one. Our first nurse simply stopped showing up after just two weeks (nice, huh?).  The second nurse was a temporary for the first until the agency could find us a permanent one.  Finally, the third nurse came in January (2016).   As many of you may know, right fro...

Ella is coming home today!!! When I arrived at the hospital this morning, Ella was in GREAT spirits...talking, smiling, laughing, singing - our typical Squishy! Yesterday afternoon Ella fell asleep around 2 pm and didn't wake up again until 8 am this morning! 18 HOURS!! I guess she needed it :) Ella is tolerating her regular formula at the normal rate, she has minimal pain and she is VERY excited to go home! Ava, Henry and Ella are SO excited to see each other...they have missed each other so much! I can't wait to see the reunion :) Michael is feeling well rested and has done such a great job of being here and caring for Ella 24/7! He's going to be home with her this next week while I return to work and then the following week is Spring Break for all of us. We're hoping Ella can start returning to school after that! We cannot even begin to thank all of you enough for your thoughts, kind words and prayers!!! We will continue to update the blog with Ella's...