Time is short. Attention is needed.  Some nights are long, loud, and test the patience of us all.  One night in particular, each week, we are hard-pressed for time, attention, and patience. For the past school year Thursday nights ha d been particularly challenging for us.  Ella had two therapy sessions this day each week...one in the early morning and one in the mid to late afternoon.  Lindsay juggled the three kids between school and therapies in the morning only to get home and feed them their lunch.  Often, because of the timing of Ella's afternoon therapy, Lindsay would have her either sk ip nap or wake up early (never a good idea to get a 3-year old up before she's ready). By the time I would get home from school I could tell Lindsay was frazzled from the demands of the day.   Sometimes one of us would have a personal appointment we'd have to attend to top it off.   Dinner.  Bath. Stories. Bedtime.  The end of ...

Since Ella's diagnosis, we have been supported on so many levels and blessed in so many ways.  Sometimes it's hard to wrap our heads around the unbelievable generosity of others. The Dailey Method is a workout that is a combination of ballet barre work, core conditioning, muscle strengthening, yoga and orthopedic exercises.  I had heard about it from a friend of mine, Kim (Ava took a ballet class with her daughter when they were two years old), who became an instructor at the Naperville location.  Other than that, I wasn't very familiar with The Dailey Method. Last fall, we were contacted by Normal Moments (the organization that provided us with a weekly volunteer), telling us that The Dailey Method of Naperville would like to sponsor our family for Christmas (they usually didn't receive requests for specific families).  The Dailey Method of Naperville had heard about Ella (no doubt from my friend), and they wanted to help. And boy did they help. In addi...

Every so often Henry asks Ella if he can ride in her wheelchair.  She almost always says "yes". The other day I watched him as he tooled around the house.  Each time he passed me he would smile.  H e maneuvered the small 7lb micro-panthera chair quite well.  He enjoys his time in the chair, knowing he can get out of it any time he pleases. As I watched him make his rounds and get himself into and out of some precarious positions I began to think of the experience he is gaining having a sister with such extreme special needs.  For Henry (and Ava alike) it's all they know.  Ella's disability is simply part of who she is...and they accept it without question or reservation. I continued watching him.   My mind raced to the future...I imagined Henry in elementary school.  I imagined him having a classmate with a disability.  I imagined him being an advocate for that classmate.  The scene that unfolded in my mind placed Hen...

The 7th Annual IL Walk-n-Roll is quickly approaching and we'd love for you to be a part of this spectacular event that raises money to help fund research for treatments and hopefully a cure for SMA.   There are two ways you can participate (see links below).  General information for the event is as follows: Walk-n-Roll June 8th, 2013 Independence Grove Forest Preserve  in Libertyville, Illinois.  Registration starts at 8:30 am and kickoff is at 10:30 am Below you'll find the direct links to: "Donate" (this is a donation to our team) "Join Our Team" (this will register you for the event as well as  guide you to becoming a member of our team) Click Here to see Ella's Home Page (ELLAwareness for SMA) We hope you can participate and as always, we are so very grateful for your support! The Casten Family

Summer is just around the corner. It's been a long winter.  We find ourselves fortunate that Ella made it through the winter without getting anything more than the sniffles and a cough.  We kept on top of her respiratory treatments, we did our best to keep Ava and Henry healthy, and people were cognizant of Ella when and if they had a cold and were around her. It's hard to believe that Ella will be three years old this summer (June 10th).  To say that she has shown us much of what life is really about would be an understatement.  The challenges that she has faced, continues to face today, and will ultimately face in the future, have been handled by her with grace.  Watching her adapt to the disease housed in her body as she goes about her day is truly inspiring.  All too often we take our health for granted. Lindsay started The Dailey Method just recently.  I will begin when school lets out for the summer.  From what Lindsay has told me a...