Ever since shortly after Ella's diagnosis, people have been telling us how incredibly important it is to make time for "us"...time for Michael and I to be together (without the kids) as well as time for us to do things alone. Well, it's easier said than done, especially with Ella's growing demands and needs. But lately, we've making more of a conscious effort to get out for little breaks. We try to get out for a date night at least once a month.  We both have bible study groups that we attend at church on a weekly basis.  We try to make time to go to the gym at least one a week. And I'm taking a gymnastics class.  Yes, gymnastics at 31 years old. For those of you who knew me growing up, you know that gymnastics was a passion of mine for quite a few years.  But it's been 15 years since I've performed any of those skills and figured it was probably not something I'd ever do again. Until recently. A little over a month ago we signed ...

Yesterday I took Ella to the orthotics clinic where she has all of her braces made.  It was a simple follow-up appointment to see how her TLSO (back brace) and KAFOs (full-leg braces) have been working out for her. Scott, her technician, said that her braces seem to be working well for her and he gave me a couple suggestions on how to continue to get the most out of these braces for her. Scott was watching Ella stand at a chair with the braces on (with my support) and he had a curious look on his face.  He asked me if she could move her legs in a "walking" motion if I hold her up.  I said she could, but she needs a lot of support.  He then said he wanted to get something and that he'd be right back. When Scott returned, he had this strange contraption-brace-type-thing in his arms, which he called an RGO (reciprocating gait orthosis).  Basically, a person's legs are strapped in and it goes up their back for support.  Once they're in, the idea is t...

September 24, 2012 would have marked my late sister's 52nd birthday. Julia Anastasia Casten was born on September 24, 1960 and passed away at the tender age of 48 on June 27, 2009.  Her death followed our mother's death of just one year earlier (June 25, 2008). Julia was much like Ella. Julia fought against Hodgkin's Disease, Breast Cancer, and compromised breathing for more than half of her life.  Ella fights Spinal Muscular Atrophy Type 2. Julia brought a unique perspective to the world.  Ella brings her perspective too, eliciting smiles from all whom she meets. Julia fought hard and was determined in every aspect of her life.  Ella fights everyday to overcome the limitations placed upon her and her determination is admirable. Julia was a beautiful girl, inside and out.  As is Ella. Julia had two siblings, parents, and friends that loved her dearly.  Ella has all of that in abundance. Julia loved to talk and be social.  Ella has...

The seasons are changing.  The beauty of Fall will be upon us shortly.  With it comes chillier temperatures, cloudy days, and the promise of a winter ahead.  The promise doesn't end there.  Colder weather also holds in its clutches the promise of sickness.  For us, it's a matter of life and death when it comes to being sick...Ella's life. SMA renders its victims so very vulnerable.  It robs them of the ability to effectively fight illness.  Simple colds.  Routines runny noses.  Run-of-the-mill coughs.  All, and more, present such a threat to children afflicted with SMA. As the season changes we are hearing that more and more kids with SMA are becoming ill.  It's par for the course.  It challenges the parents, the medical profession, and the children themselves when an illness progresses to the point of hospitalization; which is often the case. One thing that remains constant throughout the "sickness season" is th...

About four years ago I sat in a classroom with Jessica, who is pictured with Ava, Ella and Henry, earning credits beyond our Education degrees respectively.  She is a teacher in my district.  We didn't know each other but we had the commonality of teaching in District 205.  We become acquaintances. At that time, Lindsay and I had our first baby, Ava.  She must have been all but 6 months old.  The spark of life, that was to be Henry and Ella, lie waiting in the apple of our eyes.  SMA was nowhere to be found in our world.  We had never heard of it and wouldn't hear of it for a few years to come. When the class was over, Jessica and I went our separate ways; back to the lives we had built with our spouses.  Occasionally we would see each other at District functions; for the most part, though, our lives remained separate. As the story goes, Lindsay and I brought Henry into the world and 20 months later, Ella joined us.  Fourteen...

She was taken in to have her diaper changed. Lindsay picked her up from her wheelchair while Ava and Henry looked on from the small picnic table where they were eating their dinner. An ordinary scene around the Casten household.  Nothing new.  Nothing fancy.  Just Ella being taken in to have her diaper changed.  Henry looked at me.  I returned the glance and was about to tell him to finish his dinner when he spoke, "Why does SMA make you not walk?" My head tilted a bit at his question and I said, "What?" as my eyes squinted a bit. He repeated himself with a bit more conviction, "Why does SMA make you not walk?" Ava turned from focusing on her plate to focusing on me. Henry stared at me, waiting for my answer.  I had to answer him.  He wanted to know.  He's almost four years old and he wanted to know why SMA makes a person not be able to walk. I know the answer to this question.  I could probably go on and on ...

Capturing some of Ella's most recent life moments, we have put together a short video.

Her language skills have developed quite nicely. Her ability to navigate social interactions continues to grow. Her desire to participate increases daily. Her awareness of herself and others is rising to the surface. Up until now we have really had to confront, in terms of Ella, the physical aspect of Spinal Muscular Atrophy; the loss of muscle function, the disproportionate growth, the ever-present awareness of how to lift her, hold her, and keep her moving through space to gain that all important sense of kinesthetics.  We manipulated our house, our cars, our whole environment.  We've educated ourselves, Ava & Henry, our family, friends, and caregivers on the specifics of caring for Ella.  We've taken on new sleep patterns that resemble those of parents with a newborn child.  We've adjusted how we schedule our day's events to accomodate her feeding schedule.  The list of physical changes and challenges goes on and as time rolls into t...