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.

Hollis became a household name when Nathan picked Callie up from preschool for a doctor’s appointment. As he wheeled her out of the classroom, he noticed someone trailing behind them.

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 were so proud of Team Callie this morning at the North Carolina Marathon.

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.

Six months ago I thought I would be running a marathon on Nov. 19. Three months ago I realized a half-marathon was more likely. Now it’s clear that I will be walking much of the 5K as Team Callie takes part in the North Carolina Marathon to raise money for spinal muscular atrophy (SMA) research two weeks from today.

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.

Our team is gaining momentum as we near the Annual North Carolina Marathon race in November. Our team goal is to raise $1,000, in addition to corporate sponsors, for the Gwendolyn Strong Foundation, who in turn will donate all funds to SMA research.

We have 20 team members so far and it’s not too late to sign up. Contact us if you’re even the slightest bit interested and we’ll add you to our e-mail list.

If you can’t run and would like to donate directly, get a corporate sponsor or sponsor a participant yourself, please contact us or see our new Marathon page for more information.

We’ve made 2 donation forms to help anyone who would like to secure donors keep track of their donations. The donation forms are attached to our Marathon page and also have instructions about how to direct funds to the Gwendolyn Strong Foundation.

We’re always amazed at the commitment and compassion our friends, family and colleagues have for Callie and all others who’ve been changed by SMA. We couldn’t tackle these challenges alone. Thank you.

It’s been a while since our last post about Callie’s medical condition. Nathan and I have recently realized that the palliative course of treatment is our long-term plan for Callie. Palliative care focuses on quality of life, even if that means life will be shortened. This is not the only route for SMA, but it’s the one we feel Callie wants.

When Callie saw her pulmonologist a month ago, her pulmonary function values had decreased slightly. That’s not necessarily good but it’s also not of great concern.

Her pulmonologist also did an abdominal X-ray to assess a gastrointestinal issue which has since resolved. It was noted on the X-ray that Callie’s right hip is starting to come out of joint. Callie’s going this Friday for orthopedic X-rays to help map out the problem.

We don’t know what this means for Callie. Our instinct, after having listened to SMA orthopedic experts, is that this hip subluxation is unlikely to be fixed. We’re hoping there will be a non-invasive way to slow this problem which could eventually result in a dislocated hip.

We also recently found out that Callie will no longer have aquatic therapy every week. Callie has reached her peak with water therapy and unfortunately water therapy cannot be done to simply maintain abilities. Plus Callie’s annual evaluation showed that after over a year of therapy, her abilities have declined.

Callie with her frog and hippo, working hard with Katherine.

We will miss seeing Katherine, Callie’s aquatic therapist, every week. Katherine has been a key member of Callie’s health care team. The day before Callie’s first birthday, when we had no idea what was causing Callie’s significant delays, Katherine did Callie’s initial physical evaluation. She urged us to see a neurologist, and she refused to give us a timeline for when Callie would get better — something we were later thankful for.

Katherine was the first to recommend aquatic therapy and she was encouraging after Callie’s devastating diagnosis. Thank you, Katherine, for setting attainable goals — and helping Callie reach them — to keep her in water therapy for as long as possible. And thanks for giving Callie her favorite pool toys, a small frog and a funny-looking hippo, on her last day of therapy.

We plan to gain access to a pool since being out of water therapy will allow her weakness to progress more quickly, and Callie will continue to receive physical therapy at home where her goals will be more short-term.

We believe in being hopeful yet realistic about Callie’s prognosis. We try to concentrate on the positives and not worry about the future.

But every now and then we get this kind of news–that system upon system is buckling under SMA.

It’s always a hard hit because it’s true.

Actually, Nathan is running. I’ll probably serve our cause better from the sidelines.

On Saturday, Nov. 19, Nathan will be running the half marathon here in High Point as part of the annual North Carolina Marathon.

He originally hoped to run the marathon with Gwendolyn Strong’s team in Santa Barbara on Nov. 12, but California is a long way, and so is a full marathon.

So we’re excited to be forming a team for Callie, in partnership with the Gwendolyn Strong Foundation, to help raise money for SMA research.

About five people have already expressed interest in running the 5K with our team.

If you’re interested in joining Callie’s team, contact us at hello@calliegolden.org. There’s an option for a marathon (26.2 miles), half-marathon (13.1 miles) and 5K (3.1 miles). Take your pick.

You can register for the race all the way up to a week before the race. For more information about the marathon itself you can go to ncmarathon.org.

We will end SMA — one day, one person, one mile, one step at a time.

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.

Callie has been doing well since she came home from the hospital. She has a nurse with her while she’s asleep every night to help monitor her oxygen levels, her bi-pap machine and tube feedings and to help position her. We’ve been busy getting to know her nurses and telling them about all the little things we never knew we did until we started explaining them to someone else.

We are always overwhelmed with the support people continually give us, especially during Callie’s hospitalizations.

We’re thankful to Debby, a woman whom we had never met until she came to our house, picked up our van, got the oil changed, filled it with gas, ran it through a car wash and vacuumed it out.

To another Debbie, my boss, who gave me time off when I desperately needed it. And to my colleagues on unit 3300, who no doubt took on more patients and shifts while I pulled myself, and my family, back together.

To our church family, which has supported us endlessly. There isn’t enough space, time or memory capacity to list all they’ve done for us and Callie.

It’s the everyday things that help make a difference – our neighbor Paul, seeing that our grass needed to be cut and just coming over and doing it (which required picking up many boy-toys out of the backyard!).

Both Nathan and I have wonderful families who cherish Callie and make a point of traveling to see us when we’re unable to go to them.

And to those of you we may never see or know. Thank you for your anonymous gifts, your prayers and for loving our special little girl from near and far away.

Callie should be home from the hospital tomorrow. She is off oxygen and will be using her bi-pap to support her breathing at night and as needed during the day.

She has been doing well for several days and has been free to leave the hospital room. One of her favorite destinations is the hospital lobby’s fountain, especially when she has a few pennies in her hand.

As our experience with SMA has expanded, so have our ideas about Callie’s life. A year ago, Nathan and I thought it was just a matter of time before researchers found a cure for SMA that would rescue Callie from this condition, and maybe even reverse the damage SMA was doing to her body.

That kind of hope never really dies, but we have slowly changed our attitude.

Because of SMA, Callie reached her physical peak around 9 months old and has been losing physical abilities ever since. And even though we’ve seen small victories, mainly due to aquatic and physical therapy, Callie’s overall trend has been a steady decline.

This downward trend will likely continue until Callie is too weak to breathe, even with help from the machines that are steadily becoming a bigger part of her life.

So on Friday we had a meeting with Callie’s dedicated medical team to discuss Callie’s care and our expectations for the future. Our meeting was difficult but very helpful. It gave us a chance to make clear to everyone that Callie’s quality of life is paramount.

In other words, we don’t want to sacrifice her enjoyment of life for the purpose of keeping her body alive as long as possible.

Quality of life is subjective and varies from person to person; but we know Callie. Right now, she is telling us through her body, her actions and her words that she has a great quality of life, regardless of the damage SMA is doing to her body. We believe she will let us know when she’s tired. We also believe that no battles will be lost. Callie will simply find peace in knowing it’s time to leave her life with us.

Nothing can prepare us for that day and time. But like all lives, Callie’s impact on the world has and will extend beyond our family in ways that we don’t know. When she’s finished we want to find comfort in knowing that she’ll be leaving behind pain, sadness and all the limitations of this life.

Until then our job is simple: enjoy our time with her and help her live a meaningful life, however long or short it may be.