On Monday we noticed Callie’s heart rate was high. She started running a slight fever so we took her to the doctor. He noticed the beginnings of an ear infection and prescribed antibiotics.

That was Monday. On Tuesday night Callie’s fever spiked to 103.0 and her heart rate was twice as fast as usual. On Wednesday the antibiotic started working and her symptoms started to improve.

When Callie is not sick it’s easy to forget about SMA a little. But the “beginnings of an ear infection” have kept her home for almost a week. She’s been pale, tired and even says she doesn’t feel like going to preschool. Somehow we’re always surprised that she has so little reserve.

But she is doing better. She is resting, has a good appetite and, of course, is one happy little girl.

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 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.

Callie got her very own power wheelchair a few days ago. We’re still working on her driving skills.

Earlier today she wanted to go outside to play with her brothers, so we strapped her in and let her go out. One disclaimer about the video below: It’s our cat Bullet who is licking himself.

Thanks to Tim and Ginger Moore for building our new ramp; to Kristy Bateson, Callie’s physical therapist, who has worked over a year to help Callie get this chair, even though Callie ran over her toes a few times; and to Austin Elliot, our power mobility rep, who made sure the entire process went smoothly.

Two years ago, I had finally recovered from a year-long illness and our family was getting back on track.

Our oldest boys, Isaac and Ezra, were attending a Spanish immersion school. They had become conversationally fluent in Spanish and we were glad, knowing this would give them a step up in whatever career they chose.

Peter and Callie were just 2-1/2 and 1 year old respectively. We knew they were our last babies, so even though life was chaos, we enjoyed it.

Nathan and I were looking forward to renewing our goal of taking a short trip together each year. Kid-free!

Our family read a lot of books and we had chosen not to own a television.

That was our life two years ago, before we had heard the words Spinal Muscular Atrophy. Callie’s SMA diagnosis two years ago today has created a new kind of life for us now.

We pulled our older boys out of the Spanish immersion school to have them in a school closer to home. Being bilingual would be nice, but the simplicity of having them closer to home was more important. We have them in counseling to help them cope with stress at home, and to help guide them through the inevitable grief of losing their sister.

We have a TV, and it’s on a lot. Callie has the cognition of a 4-year-old, but she has the gross motor strength of a 1-month-old. Simply giving her a toy to play with isn’t feasible.

Nathan and I can’t both be away from Callie for more than a few hours, which means that the next trip we take together will be possible only because Callie won’t be here anymore.

So 2 years later, our goal for each day is always the same — keep treading water, and don’t think about tomorrow.

Yesterday evening Callie started acting more like herself, and by this morning we were starting to think she might be getting better.

Today Callie’s pediatrician assessed her and listened to her lungs. He said her lungs sounded better than they had sounded Wednesday.

So we’re now confident enough to say Callie is getting better. She’s still sick and very weak and vulnerable, but it seems she’s improving.

It was very warm here yesterday so Callie was able to get outside for some fresh air. And this morning Callie’s friend Hollis stopped by to visit. Callie was very excited about that.

Thank you for all your thoughts and prayers for Callie.

This past weekend, Callie developed her 2nd or 3rd cold in a year’s time. We went to her pediatrician on Monday and he heard a little fluid in her lungs and discovered a whopping ear infection. We started her on an antibiotic and were relieved that this was something that was treatable. Between the antibiotic and her aggressive pulmonary therapy, we knew we’d have this licked in no time.

Then yesterday evening Callie’s status worsened. Today we went to the doctor again and she’s developed aspiration pneumonia. This is one of the most dangerous conditions with SMA. Since SMA affects all muscles in the body, her muscles used for swallowing are weakened as well. So food and drink can inadvertently pass into her lungs rather than into her stomach.

We’ve started her on another, stronger antibiotic and several other medications to help with respiratory function and comfort.

As always, we don’t know where this will lead. All we know right now is that we have a happy little girl who’s very sick and very loved.

Erin Moran finished her first half-marathon on Nov. 19, helping Team Callie raise more than $5,000 for SMA research as part of the annual North Carolina Marathon.

On March 18, Erin will run her second half-marathon, this time in the ING New York City Half Marathon. She’s running to raise money for Families of SMA.

And once again, she’ll also be running in honor of Callie.

“It was a very powerful experience for me to run that race with Callie’s sweet face on my T-shirt, knowing that all those people and so many others supported me and the cause I was running for!” Erin said of the Nov. 19 race in High Point. “I knew I wanted to do it again.”

A half marathon is 13.1 miles, so Erin is working to raise $1,310 for Families of SMA, a non-profit organization that funds SMA research and provides support and information to families like ours who have been affected by SMA.

To make that goal more manageable, Erin is asking for donations of $13.10. If 100 people were able to donate that amount, Erin would reach her goal.

“I would love to raise more if possible,” said the High Point native who started running last July, about four months before completing the half marathon in November.

We were proud to have Erin as part of Team Callie in November, and we’re proud that she’ll be running in honor of Callie in New York next month.

If you’d like to contribute $13.10 or any amount, you can do so at this link. Or you can mail us a check and we’ll make sure Erin gets it. Our address is P.O. Box 6254, High Point, NC 27262.