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 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.

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.

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.

We’re celebrating Callie’s birthday today. Here’s a video looking back at the past three years:

Today Callie had her regular appointment with Dr. Kravitz, her lung doctor. We consider him Callie’s primary specialist since SMA weakens Callie to the point that a cold can be life threatening.

Fortunately we had no such pressing concerns today, so we talked more about our long-term goals for Callie. Dr. Kravitz is an SMA expert who knows our family well, so we’re always interested in his thoughts.

Since Callie’s SMA diagnosis nearly two years ago, we’ve slowly embraced palliative care, which focuses on Callie’s quality of life. We do not want to spend so much time prolonging her life that she doesn’t have the time or strength to enjoy it.

But we also have sought the opinion and guidance of experts at Duke such as Dr. Kravitz. At times we’ve wondered whether seeking care from multiple experts contradicts our beliefs and wishes for her life.

This philosophical dilemma has real-life implications. Should Callie be put on life support if she needs it, even if it’s just for a day or two?

The easy answer is yes, but we also know that she might not come off of a breathing machine very easily once she’s been on one. If that happened she’d spend her last days in a hospital or would have to remain on a ventilator to stay alive.

That’s just one of many similar questions we’ve faced since SMA impacts multiple body systems.

Today Dr. Kravitz said it’s good to at least know all options that are available for Callie. We can always decline any treatment if we think it’s not in Callie’s best interest, he said.

But our focus on quality of life through palliative care doesn’t mean we have to decide we’ll never take Callie to the hospital. It doesn’t require us to stop seeing some of Callie’s specialists.

Instead we’ll be able to seek the guidance of Callie’s doctors and her Hospice nurse — along with Callie herself — as hard questions come our way.

We were honored last week to share Callie’s story with High Point Enterprise reporter Jimmy Tomlin.

Jimmy’s story appeared in Sunday’s editions, and it’s available here.

Yesterday, Callie graduated from intensive care to the step-down unit. Callie’s lungs sound clear and her doctors think her sickness has resolved.

Now we’re left with SMA.

Several times over the past few days Callie’s blood-oxygen level has dropped and remained too low, despite having breathing support from bipap and oxygen and despite the fact that her lungs are healthier now than they were a week ago.

This is happening because SMA has weakened Callie’s body to the point that fighting a cold leaves her unable to inhale and exhale regularly.

We hope a few days of rest will give Callie back the reserve strength she needs. If she is not able to regain the strength she had before she woke up with a runny nose on May 26, she will need more support from bipap and oxygen indefinitely.

We will be discussing Callie’s short and long-term needs in a couple of days with some of her doctors at Duke. We still hope she’ll be able to come home from the hospital this week.