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.

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.

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.

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.

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.

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.

When he turned around he saw a little girl following them to the door. “Hollis you can’t leave with Callie,” one of the teachers said.

When we asked Callie who Hollis was, she replied, “My best girl.”

We’ve always been concerned about how other children would treat Callie. Not just rejecting her, but seeing her as someone to pity. And children have always been nice to Callie — bringing her toys and books — but there’s something special about Hollis.

As with most best friends, it’s nothing we can pinpoint. It’s simply a comfortable presence. It doesn’t matter that Callie can’t sit on the floor to play, dance to the classroom music or chase Hollis around the playground. She simply loves Callie. And Callie loves her.

Nathan and Callie went to Hollis’ third birthday party earlier this month at a gym full of inflatable jumping contraptions. Had it been anyone else’s birthday, Nathan probably wouldn’t have taken her. At that time, we were too caught up in our own sadness, which we projected onto Callie, thinking she would feel bad too.

Instead, Callie had the time of her life. Nathan helped Callie “jump” on every piece of equipment, and he came home with a half-broken back and an ecstatic Callie. Hollis’ mom snapped this picture of Nathan taking Callie down a huge inflatable slide. I understand it was quite a sight watching Nathan hurl himself up the slide holding Callie in one arm and using the other to grasp the toddler-sized climbing ropes.

We’re frequently told how Callie has changed people’s lives. Hollis has changed ours.

We’ll post more details about the team and the total amount of money it raised for SMA research soon.

Here’s a collection of photos from the event.

Any team members who have more photos can e-mail them to hello@calliegolden.org and we’ll add them to this gallery.

Thanks to all team members and donors who made this morning possible.

These shrinking goals have fed a growing sense of failure. I’ve wondered why it’s so hard to go out and run a few times a week. Can’t I do that for Callie and the thousands of other children who live with SMA?

It sounds easy enough. But I have not done it. There are reasons. The physical and emotional energy Callie’s care requires takes its toll on our family every day. We’ve been overwhelmed. We’ve been sad. Callie’s not a baby anymore. It’s more obvious to others — and now to her — that she’s different. She’s still losing abilities. Now she’s losing her head control. We’re always tired.

But that’s life, and I should be able to deal with it and make this happen, I’ve thought as each day has passed without me making it happen.

Christy and I were talking about this the other day and we realized something incredible. As my sense of personal failure has grown, Team Callie has grown from 1 person to about 30 people. Team members have been training for months and raising money for SMA research – more than we could ever hope to raise alone. Because of the team, more people know about SMA today than yesterday.

I wish I had done better, but Team Callie’s accomplishments have helped me remember that this project never was about me, whether I run 2 miles, 13.1 or 26.2. It’s about Callie and everyone else with SMA. It’s about the support that comes from family, friends and anyone else who’s willing to walk, jog, run and ask for money for a cause. Thank you, Team Callie.