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.

Since we last posted, Callie’s condition has improved even more. Her strength seems to be close to where it was before she got sick a couple weeks ago.

Today her new home care company brought a Trilogy Bipap machine. It’s one of the most popular models, mainly because it’s more sensitive to her breathing, has more safety features and is very portable.

When we return home — hopefully within a few days — we will be making some changes in Callie’s day-to-day care. We will continuously monitor her heart rate and oxygen saturation level with a small machine Callie calls “my toe.” (She calls it that because we always put the sensor on her toe.)

This way we will be more likely to notice subtle changes that could indicate she’s starting to get sick so we can act.

We’re very grateful to have our happy, energetic girl back and look forward to having her home.

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.

Callie has been slowly improving over the last couple of days. She’s been able to be off the Bipap machine for progressively longer periods while awake, but still uses it the majority of the day.

She also still requires oxygen while wearing Bipap. The goal is to get Callie stable on her home Bipap machine–we’re getting a new one that should be delivered any day now–and transfer her to a step-down unit. We anticipate that she’ll be discharged in the middle of next week.

We’re hoping that Callie will be able to bounce back from this. We know she will be on Bipap while sleeping, but it’s always a possibility that her need for more ventilation could be permanent.

Every time children with SMA get sick, like anyone else, they get weaker. Unfortunately, sometimes SMA children never fully regain their strength. We’ll wait and see.

Either way, Callie still enjoys life and we will make it as fulfilling for her as we possibly can.

We are reminded again and again of how fortunate we are. It takes only a few days in a pediatric intensive care unit to know that there is no shortage of tragedy in the world.

To see Callie awake, talking and enjoying life–even if we’re supporting her body more and more with machines–means the world to us.

Callie’s oxygen saturation level started falling right after she went to bed Monday night. Within a few minutes it was clear that she was in distress and there was nothing we could do to help her. We called her pediatrician and then rushed Callie to our local emergency room, which is only a few blocks away.

When we arrived Callie’s pediatrician had already contacted the hospital staff with instructions for her immediate care and to make sure she was transferred to Duke University Medical Center, whose staff is much more familiar with the fragility of children with SMA.

Callie arrived at Duke via helicopter at about 3 a.m. Tuesday. She is still in the pediatric intensive care unit right now, but her condition has stabilized. She is undergoing aggressive respiratory therapy on a regular schedule. Chances are she has only a cold or another kind of common upper-respiratory virus, and although we were able to keep her in pretty good shape at home for five days, by Monday night she was apparently too tired to maintain her blood-oxygen level, even with our help.

We’re grateful for Callie’s pediatrician, Dr. James Anderson, who guided us and advocated for Callie late Monday night and Tuesday morning. We’re also grateful to Sandy Franks for spending the night with our boys and taking care of them Tuesday, all on very short notice.

We’re hoping Callie will not have to stay in the hospital beyond this weekend. But when we get home things will be different. It seems that a bipap machine will play a much larger role in Callie’s care. Callie had a good experience with bipap during her long hospitalization this past winter, but we have rarely used it at home and never while she’s awake. It’s also possible Callie will need professional nursing care at home.

We’re taking things day by day and, as usual, trying not to think so much about the future. Rather than focusing on what she’s losing we’re thinking about what she has: a charming personality, a desire to enjoy life, a purpose to fulfill and a family with a tremendous support network to help her.

Thanks to everyone for the thoughts and prayers in response to our last post.

Callie is still not feeling very well. Managing her secretions has been a constant battle over the past few days. We’re grateful to have medical equipment at home for this purpose.

But to win this battle with allergies or whatever it is that’s causing so much trouble, we’re starting to think Callie will need more help than we can give her at home. We’ll be checking in with her primary care physician Monday to see what he thinks.

Good news includes that she hasn’t had much of a fever and that her oxygen saturation level hasn’t dipped to dangerous levels. We’re still hoping to get Callie past this trouble without needing a hospital visit. But, of course, we’ll do whatever is best for her.

Thanks, again, for reading our updates. We’ll post again within a few days or as things change.

Since our last post six weeks or so ago, Callie has been doing well. We traveled to Washington, D.C., in early May for the Fight SMA annual conference. Nathan and the children enjoyed exploring the city, and the conference gave us a chance to speak to several SMA experts, which come in the form of doctors and parents.

One of those parents was Bill Strong, father of Gwendolyn Strong. Bill and Victoria Strong have been excellent role models for us as we’ve been learning how to help Callie not only survive but enjoy living.

Nathan is “seriously considering” joining the Gwendolyn Strong Foundation team for the Santa Barbara Marathon in November to raise money for SMA research. When he’s officially committed to running we’ll be posting more information in case anyone’s interested in sponsoring Nathan (and Callie) in the run.

Although Callie’s health has been good overall, we are a little on edge tonight. A couple of days ago, Callie had a small cough. Since our entire family has been ravaged by allergies, we did extra cough-assist for her and some allergy medicines.

Yesterday, however, Callie woke up not feeling like herself. She had an elevated heart rate and a slight fever. Her doctor immediately put her on antibiotics, and she seemed to be bouncing back.

Tonight, she asked to sleep with her “mask”–her bipap–something she hasn’t done since she was hospitalized.

Naturally, this makes us nervous as we’ve seen how rapidly Callie’s health can decline. We appreciate your thoughts and prayers as we navigate the next few days. We’ll post again soon to share how Callie’s doing.

Life with a G-tube has been going well for Callie since she returned from the hospital a few weeks ago. Now that she’s getting more calories we have noticed a big difference in her energy level and her attitude.

She has been talking more, and she enjoys typical 2-year-old games such as peekaboo. She also throws typical 2-year-old fits.

Callie loves preschool and she has re-started her weekly physical therapy session. We’re working to re-start her aquatic therapy within the next few weeks.

This past Tuesday Callie saw her pulmonologist and her surgeon at Duke. The pulmonologist was pleased with Callie’s lung function tests, and we’ll soon be collecting data about her oxygen levels at home.

Callie’s surgeon was also happy with how she is healing. She is having a minor skin reaction to having the feeding tube present. The surgeon prescribed a topical medication to help with that. We’ll have to take Callie back in the next 4 to 6 months so the surgeon can change her feeding tube, a routine procedure that does not require sedation. Callie will continue to need her tube changed and adjusted throughout her life as she grows.

We’re hoping to attend the annual FightSMA conference in Washington, D.C., this spring, where Callie’s pulmonologist will be on the doctors’ panel. At last year’s conference we learned a lot about SMA and ongoing research to find a treatment or a cure.

Thank you for reading our updates and for your interest in Callie’s condition.

Callie’s been home from the hospital for a week, and we’re grateful to have a more normal life for her and the rest of our family again.

In the past week we’ve settled into a plan for Callie’s nutrition.

While she’s asleep we’re using her new G-tube to give her calorie-rich formula and fluids. While she’s awake she eats and drinks small amounts orally, based on her appetite.

She is not yet getting the calories she needs, but we’re slowly increasing the volume in her tube feedings based on how well she tolerates them.

We’re taking this process a lot more slowly than we did in the hospital, where tube feeding was making Callie miserable.

It’s been great to have Callie back home. She was very excited to be back in preschool this week, and we hope to have her back in physical therapy as soon as possible.

We’re planning to get back on track with thank you notes, too. But for now we’d like to thank everyone who has offered thoughts, prayers, money, food, cards, notes, child care, toys and other kinds of support. You’ve all helped keep us going through the past month.

Callie came home from the hospital today! She was glad to see the outdoors again and to be home with her brothers and her kitty.

By her fourth day of tube feeding, Callie had made it clear it wasn’t working for her. We base every decision we make for Callie on what she tells us through her body and her spirit. We listened to her and stopped the tube feedings on Monday night.

So even though she still isn’t taking in enough nutrition, Callie’s doctors and nutritionist agreed with us that Callie could do just as well – or possibly better – at home.

For the next day Callie is eating and drinking only by mouth so we can count the calories she is capable of taking in that way. By tomorrow we’ll have a better idea how much supplemental nutrition she needs through her new G-tube.

We’re hoping she will be able to tolerate her tube feedings better as she heals from the surgery in the next few weeks.

The upcoming days, weeks, and possibly months will be tedious as we figure out how to give Callie the best nutrition in a way that leaves her feeling healthy and happy.

For now we are thankful to have her home.