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.

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.