Monthly Archives: August 2012

An update

Callie has been doing well. She’s had several months of relatively good health, and we’ve been enjoying this time.

Though she hasn’t had a major health crisis, Callie’s physical weakness is a way of life. She depends on us for almost all of her day-to-day activities. She can still feed herself finger foods such as blueberries. She can still play with small toys.

But in most other ways she is like an infant. We carry her around and support her head. We dress her. Although she is 3-1/2 years old we don’t imagine she’ll ever be potty trained simply because of the difficulty of sitting up on a toilet.

We have nurses who spend the night with Callie more often than not. We enjoy the break, and Callie loves having new adults around to read her books and talk to her. It usually takes a new nurse a few nights to learn how manipulative and cunning Callie can be as she thinks of new ways to avoid having to go to bed.

Most days around our house include a viewing of the Disney movie Tangled, which is a modern version of the Rapunzel fairy tale. Callie insists on watching the movie at least once a day. She knows every bit of the dialogue as well as the songs. She even hums along with the score. Our three boys know the movie just about as well as Callie does.

Callie at the beach
Callie on the beach.

Our family had a great time at the beach in June. It was our first vacation since Callie’s diagnosis more than two years ago. Callie liked sitting beside the ocean, feeling the waves lap around her seat.

We soon should be capable of carrying Callie’s power wheelchair on the road. It’s been a long process, but we now have a vehicle big enough to carry Callie’s nearly 300-pound chair, and we have a wheelchair lift installed on the back of the vehicle. We’re now waiting on some waterproof tie-downs to hold the chair in place on the lift.

Our primary goal for Callie is that she enjoys her life. Right now, with the help of so many people, we are achieving that goal.


Taste of the Town

We’re grateful for the support of Hospice of the Piedmont, whose staff is helping guide us through Callie’s journey with SMA. On Aug. 21 Hospice will host its annual Taste of the Town fund-raiser. We plan to attend, and anyone else is welcome. You can learn more here. Tickets are limited, but they’re still available at any High Point Bank branch.