Callie had a restful night last night. She slept well and got pain medicine when needed.

She’s had more pain today and we’ve been working to find the right combination of medicine that will keep her pain under control.

We also started her on tube feedings today. She’s had a hard time adjusting to them, but we understand from the nurses that that’s not unusual. They’re working with the new tube to make sure she’s comfortable during the feedings.

Right now, our tentative plan is to feed her via the G-tube during the night and allow her to eat by mouth during the day.

When Callie was put on TPN through her PICC line, her lungs improved as well as her ability to swallow (although she’s still unable to take all her nutrients by mouth). Callie also gained 2.5 lbs in just over a week after starting the TPN! She’s finally hit that ideal third percentile on the growth chart and she’s had a lot more energy.

We’re hoping she can come home by the middle of next week. And we feel a lot better knowing that we now have a way to give her the nutrition she needs.

It’s been a year now since we learned Callie has spinal muscular atrophy. That day is still strong in my memory so I decided to write about it.

Callie had just turned 1 and I struggled to keep her wispy hair in place while we waited in the doctor’s office.

A medical assistant came out to greet us. She gave Callie a big smile and said the doctor was ready for us. We followed in her cheerful wake and stepped into the designated room.

Callie’s 1-year portrait

The doctor came in right away and explained how the test was done. Its simplicity made me nervous. I had come to this appointment alone, thinking this was a routine test and we would get the results later.

I realized that I would know Callie’s diagnosis in a few minutes. I needed my husband, but I had told him it was a simple test so he may as well stay at work.

The doctor began by delivering electric shocks to Callie’s foot. She cried a little, but seemed unfazed overall. The diagnoses narrowed.

Then came the painful part: a needle-stick into Callie’s thigh muscle. The test didn’t work because Callie wasn’t capable of moving that part of her leg. So the doctor stuck her again in her lower leg.

I clung to her, trying to console her as the doctor called out orders so the assistant could hear him above Callie’s screams and the crackling whir of the machine.

Then the doctor quietly said, “OK.”

His shoulders slumped as he turned off the machine and waited for me to comfort Callie.

Sorrow thickened the air. It was what we suspected. I stared at my daughter, her large brown eyes framed with long wet lashes. I cried softly as I held her head against my own. I didn’t ask many questions.

The assistant offered to help us to the car. When we reached the front office, I told her I could make it to the car alone. My tears gave way to weeping as I walked out, still cradling Callie.

My legs trembled and I made a conscious effort not to fall under the weight of grief. I found myself repeatedly sobbing the words “I’m so sorry” to Callie.

She looked at me, knowing she should be upset but not knowing why.

My hands shook as I strapped Callie into her car seat. I pulled myself into the car, shut the door and reached for my phone.

Callie has done so well over the past two days that her doctors are talking about sending her home this weekend.

Her at-home bipap machine arrived at the hospital today. She will wear it tonight to make sure there are no issues.

We’re hoping Callie will continue to eat and drink more each day. We will discuss long-term nutritional issues and possible long-term bipap use when we follow up with her pulmonologist in a couple of weeks.

We’d like to thank my parents and sister for driving up for part of this week and this weekend to help with our boys. And we continue to be grateful for the love and support from so many people.

Callie had a restful night (and afternoon nap today) on the Bipap machine.

However, her IV went bad twice, and the IV team cannot get another IV going. Her IV likely infiltrated (burned through the vein to where fluids were leaking into the surrounding tissues) because of the nutrition solution she was getting, despite it being a milder concentration.

The doctors are considering other options for IV access, such as a central line or a PICC line. Both of these options are more invasive and prone to infection if not cared for properly. But both also would allow Callie to get more fluids, nutrition, etc., without damaging her veins. And both could be a source for future blood samples so Callie wouldn’t have to be stuck each time the lab needs a sample.

So we’ve reached a difficult spot when it comes to her nutrition. We’re hoping to be able to sort out what is best for Callie in the next day or so.

Please pray that Nathan and I will be able to navigate these difficult decisions that are coming sooner than we had anticipated. Thank you for all your prayers and supportive words on this blog.

We’d also like to thank our friend Deborah, who set up a meal rotation for our family.

Last night was Callie’s first night on bipap and she did very well. She didn’t fight it much, mainly because she was completely exhausted.

She had one troublesome episode during the night, but we took the bipap machine off to deep-suction her. She still couldn’t keep her oxygen levels up after that, even with the bipap. But that was easily remedied by putting oxygen flow into the bipap machine.

Today she was much more alert and playful. She talked a lot and wanted to read books. She even smiled at some of the doctors, which was a first!

She wore the bipap again during her nap and did wonderfully. A lot of children with SMA take quickly to a bipap machine because they realize they can rest better and breathe easier with it.

Tonight, Callie will be getting something called Total Parenteral Nutrition–TPN–through her IV. That’s basically all the electrolytes, calories, protein, etc that she needs in a day. The TPN will be a regular order until her feeding improves.

I was hoping that Callie might be able to come home by the end of the week, but her doctors say that although it’s not impossible, it’s not likely.

She’s still a little too unstable from a respiratory standpoint and her lack of nutrition is a big hindrance as well. Her doctor wants her to have a couple days of rest on the bipap and then see how she’s doing. If she’s still not eating well, we’ll be discussing some other feeding options that could allow her to come home.

We appreciated the visits from our pastors yesterday and today. One of them even brought blueberries and Cheerios, Callie’s favorite foods.

Nathan and I are starting to feel the strain from our family not being together for this amount of time (Duke is a good hour and a half away from our home). We sincerely appreciate the support and prayers from so many people and especially from our church family.

It’s been a shock to us that a common virus followed by a cold has had such a dramatic impact on Callie’s health. We always knew it could, but really didn’t understand how bad it could be.

Close to midnight last night, Callie spiked another fever. The doctors drew some lab work and started antibiotics, even though they still feel this is a virus.

Callie continued to have trouble with her oxygen level last night and we administered “blow-by” oxygen–a tube that blows oxygen near her face. That got her through the night pretty well.

However, this morning, her oxygen levels were in the 80s. She was wide awake and we had already done our little routine of chest PT, cough assist and deep suction. This time, we put oxygen directly into her nose, which helped some. Even though she was exhausted, we did a second round of deep suctioning. That seemed to do the trick because her levels came up to the low 90s and she took a nap afterward without requiring oxygen.

Her pulmonologist, an SMA expert, came to see her today and decided to start putting a bipap machine on her while she’s sleeping. A bibpap machine basically forces oxygen into the lungs and will help her breath easier, clear secretions and rest better. It’s non-invasive ventilation as opposed to intubation with a ventilator. He doesn’t think Callie will need to be on a ventilator during this admission.

The only other lingering issue is Callie’s nutrition. She hasn’t eaten well in about 4 days. Although she’s getting IV hydration, she’s not getting enough calories. That also affects her breathing since she needs energy to help herself breath. We plan to start IV nutrition tomorrow. Our hope is that the bipap will help get her through this difficult period and that she will start eating well again before needing more invasive methods of nutrition.

Thanks to Fran and Sandy for keeping our boys today so Nathan and I could be at the hospital together with Callie.

Thank you for all the prayers and concern for our family.

Callie’s doctors are confident that she has a virus and that it will run its course. She hasn’t had a fever since last night, which is definitely good news. We’re hoping that the worst has passed. However, she needs to remain in the hospital so the doctors can watch her closely and act quickly if necessary.

We’re hoping she’ll come home early next week.

In the meantime, I’m taking some of her stuffed animals and a couple of balloons to try to help keep her entertained. (Nathan informed me that the game of throwing her baby doll overboard has lost its magic.)

Again, many thanks to our friends, family and church for all of your support.

Callie was admitted to Duke University’s medical center today. Her doctors strongly suspect that she has a virus (RSV has essentially been ruled out) and children with SMA cannot tolerate common illnesses as well as other children.

Nathan and I noticed Callie had an increasing cough that began Wednesday night. This alone isn’t alarming or uncommon with SMA. Callie was seen by her primary doctor Thursday afternoon just to make sure everything was OK. All of her vital signs were normal, as was her activity level. We increased her allergy medicine because her nose was a little on the runny side.

Last night however, Callie’s health became more worrisome. Her oxygen level was low, her heart and respiratory rates were elevated and she couldn’t sleep.

We left for Duke’s ED first thing this morning after speaking with her doctors. By the time we got there, she had developed a fever as well.

She had a chest xray as well as lab work done. Callie is spending at least one night in the hospital because she’s still too unstable to come home.

We’ll know more tomorrow morning and the doctors have said they will check on her frequently during the night.

We would appreciate your prayers during this particularly difficult time for our family. This has served as a reminder of how fragile Callie’s life is. Please pray that we will not allow worry and anxiety to dominate our thoughts and actions.

Tonight, Callie has her special pillow and blanket, her stuffed fox, her “Little Elmo” and her Daddy to help take care of her.

And for now, she’s doing well.

Callie had an appointment with her pulmonologist (lung doctor) this past Friday. Every time we visit, Callie gets several lung function tests. She’s been sick 3 times since her last visit, so we were anxious to see what the tests would show.

Her lung capacity–the amount of air they can hold–is still the same, which is a big relief. Her muscle strength (the muscles that help her breathe) was slightly weaker, but not significantly so.

Overall, her doctor is very pleased with how she’s doing. He has a slight concern about her oxygen levels dropping low when she’s sick. We’ll be sending him some data from her machine that monitors her oxygen levels at night so that he can take a closer look at what’s going on.

Thanks to our friend and neighbor, Fran, who kept the boys for us while we made the trip.

This past weekend was also special because Callie turned 2 years old! We’ll be creating a photo gallery in the next month or so and will be sure to include pictures from her birthday.

Thanks for all the prayers and support so many of you give our family.

We’ll post again soon!

We want to wish a Merry Christmas to everyone who reads our blog and has supported our family since Callie’s SMA diagnosis.

We’d like to especially thank All God’s Children preschool at North Side Baptist in Greenwood, S.C. The preschoolers and their teachers created handmade cards and ornaments for Callie. Callie loved them all, and they look great on our tree.

The preschoolers also have given an offering every Wednesday this school year to help with the various costs of Callie’s care.

Thanks also to my friend Beth, who hosted a special Christmas Pampered Chef party to help raise money for Callie and the Gwendolyn Strong Foundation. Beth donated 100 percent of her profits to the SMA cause, and plenty of people helped by ordering Pampered Chef products.

Overall, Callie has been in good health so far this winter. She had a bout with (almost) pneumonia. We were fortunate to catch it very early.

She was immediately put on antibiotics, and everything cleared up quickly.

We are still struggling to get Callie the calories she needs. We’ll be talking with her doctors about getting a feeding tube in the near future.

She had a poor appetite a few weeks ago (that was not related to the pneumonia). Going without food and liquids for eight hours or so caused her oxygen saturation to decrease while her heart rate and resporations increased to dangerous levels. We were able to get things back under control but she ended up losing some weight and strength that she’s still trying to gain back.

These recent health scares reminded us of the delicate balance we have with Callie’s life, and we’ve found that holidays and other celebrations tend to be bittersweet. Watching Callie feed her new baby doll, knowing that if nothing changes she likely will not have the opportunity to grow up and have a baby of her own, reminds us of the uncertain future Callie faces.

But with help from friends, family and strangers, we’ve savored today.