We’re back home

Callie and "Foxy," her favorite stuffed animal, before heading home.

Callie and “Foxy,” her favorite stuffed animal, before heading home.

Thankfully, Callie had a good night and we were able to come home this afternoon. It’s a big relief since she never stopped asking for her brothers.

She is, however, not very happy about having 8 missing front teeth. She says she looks like a vampire – which isn’t entirely untrue. :-)

Her pain has been minimal and her appetite is starting to come back. Overall, this procedure has gone as well as we could have hoped.

Thank you, everyone, for your caring concern.

Today’s surgery

We’re very happy to report that Callie’s surgery went well. She was breathing on her own not long after leaving the operating room.

After going under anesthesia, Callie got dental X-rays for the first time so that the dentist could determine exactly what Callie needed. As it turned out she had one cavity filled and a total of 9 teeth pulled, including all 8 front teeth. Callie’s jaw is very small, and her permanent teeth were trying to come in but couldn’t because it was so crowded.

The other extraction was in the back of her mouth. That tooth was so deformed that the dentist thinks something went wrong when it was developing.

After the dentist finished, Callie had an uneventful extubation, and she didn’t even need her Bi-pap. She has slept most of the afternoon and evening and remains in the pediatric intensive care unit so that her breathing can be closely monitored.

The funniest part of the day happened just before surgery. Nurses and other health care professionals routinely confirm a patient’s identity. So when the anesthesiologist asked Callie if she was “Callie Golden,” Callie shook her head and quickly said, “No.”

Our hope is that Callie can go home tomorrow. Thanks, as always, for the steady flow of prayers and well wishes.

Dental surgery tomorrow

Callie is scheduled to have her dental surgery tomorrow morning around 11 am. We’ve made some progress at home with getting her to wear her Bi-pap, but she still won’t sleep with it on. After she’s extubated, our hope is that if she’s awake enough to scream about not wanting to wear the Bi-pap mask, her oxygen levels will be good enough so that she doesn’t need it. But we plan to go in armed with books and movies to keep her occupied in case that doesn’t happen.

We will post an update about Callie’s surgery either Tuesday night or Wednesday morning.

As an aside, people are usually interested in how our boys interact with Callie. We always say that they, naturally, adapt everything they do to accommodate her. This video shows just that. Isaac and Ezra had new Star Wars lightsabers, so one afternoon, Isaac decided to get some of the action on video. That turned into him wanting to make a little movie. And you can guess who he decided to cast as the heroine.

(Note: Callie’s glasses are just for play. Isaac and Peter recently got reading glasses, and when Callie had her eye exam, she cried when they told her she didn’t need any. So Nathan couldn’t help but get her a pair of fake glasses to play with.)

New problems

We’d like to thank everyone who has prayed for Callie and our family as we’ve dealt with her back pain. We were referred to a palliative care clinic at Brenner Children’s Hospital that deals with medically fragile children. Managing pain is one of their specialties, so we’ve been trying several combinations of medicines to try to find a magic solution.

A new, much bigger concern we have is that Callie needs dental surgery. For many people, this would be a basic, outpatient procedure. But with Callie’s high aspiration risk and her inability to protect her airway, this procedure will require general anesthesia, and she’ll have to be admitted to Duke Hospital.

Callie at the beach earlier this month.

Callie at the beach earlier this month. (Photo by Debbie Bagwell.)

This presents a few challenges for us. First of all, Callie has major anxiety related to anything medical. She loves her pulmonologist, Dr. Kravitz, yet still cries and begs to go home constantly when she has appointments. Another challenge is the fact that when she’s taken off the breathing machine after surgery, she’s likely to need her Bi-pap machine – which she hates. So we’re working with her now to try to get her to tolerate it.

We saw Dr. Kravitz last Friday, and as always, he’s already planning. As soon as he heard from the dentist that Callie needed dental work, he contacted one of the pediatric anesthesiologists and a doctor who leads the pediatric intensive care unit (PICU). Dr. Kravitz likes to plan for every worst-case scenario, then hope for the very best. Having him around makes us feel a lot more secure. He says that hopefully, she’ll wake up in recovery, need her Bi-pap minimally, or not at all, and be out of the hospital in 24 to 48 hours.

The procedure is scheduled near the end of August. For the past few weeks, and likely for a number more, we’ve felt overwhelmed, stressed and worried. We’ve seen some things worsen quickly, such as not being able to ride in a car seat more than 15 to 30 minutes without having to be repositioned due to pain and discomfort. Some things we can’t really pinpoint.

On a positive note, we had a wonderful trip to the beach a couple weeks ago. Callie loved sitting in the water, looking for sea shells and playing in the pool. It was nice to have such a good respite before the chaos of school begins.

Questioning our decisions…again

Callie has been doing well recently. She, of course, loves school and thoroughly enjoys her classmates, teachers and nurses. But one issue we’ve been dealing with the past couple of weeks is back pain. Callie has scoliosis (an “S”-shaped curve in her spine) and kyphosis (another curve in her spine that results in a “hunchback” look). This is nothing new, but it might be becoming more of a problem. Our back muscles hold our spine in place, and if the muscles weaken, the spine can’t remain straight.

As Callie continues to grow, the curves in her back will get worse. This affects her ability to sit, breathe and hold up her head. Callie’s back pain was so constant and severe that we took her to get X-rays last week. We were concerned that she may have fractured part of her spine, simply due to bone weakness all children with SMA have. Fortunately, the X-rays came back negative and we’ve been able to control her pain with medication.

callie-in-wsAlthough we have chosen a palliative approach to Callie’s care, which focuses on comfort and quality of life over procedures that will prolong life, Callie’s pain was severe enough for me to start researching surgical options, particularly rod placement, for correcting the curve in Callie’s spine on the chance that it might add to her quality of life.

Although I had some hope, in the end I found what I expected: Surgery isn’t recommended for children Callie’s age. And although rods have been placed in children Callie’s age and even younger, the long-term effectiveness is still unproven. In addition, there are always risks for infections, respiratory, nutritional and orthopedic complications with this surgery. I also discovered that the non-invasive approach to scoliosis, a back brace, doesn’t prevent scoliosis – it doesn’t even delay the progression.

Surgery would put Callie through a major procedure that has no scientifically proven benefit, cause her tremendous pain and put her at risk for developing serious complications.

This disease is relentless. I wish we could save her from it, but we can’t. The past few weeks have provided yet another reminder that Callie will be healed someday, but it won’t be here.

Make-A-Wish concert

Several weeks ago, we had the privilege of attending the second annual Make-A-Wish benefit concert hosted by Elon University. The concert featured a number of a cappella groups from North Carolina and was organized by Nick Cook, a student at Elon, as well as a member of one of its a cappella groups, Vital Signs.

Nick and Bella

Nick with his sister Bella at the concert.

Nick has a 6-year-old sister, Bella, who has Down Syndrome and was diagnosed with acute lymphoblastic leukemia when she was 3 years old. (Bella’s now in remission!) Not long after her diagnosis, their family took a trip to Disney World to celebrate Bella’s life. Their family had the time of their lives at Disney, and it was Make-A-Wish who made that possible.

When we arrived at the concert hall, I expected to find about 100 attendees; instead there were about 500. I spoke very briefly about Callie’s diagnosis and what it means for our lives—how our goal is to give her the best life possible while we have her here with us. Back in 2013 Make-A-Wish sent us on an adventure to Vermont. We’ll always be grateful for the “snowy day” (as Callie’s always called it) experience. Nathan made a video of our trip that played at the Elon concert. No words can take the place of pictures.

The Elon concert raised over $4,300 for Make-A-Wish! Granting a wish costs, on average, about $6,000. We’re looking forward to meeting that goal at next year’s concert.

Six!

callie-6Yesterday, we celebrated Callie’s sixth birthday. She took mini-cupcakes to school and for dinner, Zaxby’s was her restaurant of choice. Her favorite presents were mini Lalaloopsy dolls – a perfect gift for children with muscle weakness – and a tiny, shelf-sized guitar.

callie-guitarDespite a couple illnesses, Callie’s health has been good overall. She’s determined and continues to excel in school, despite needing frequent breaks. Her teacher and nurse are wonderful and regularly adapt activities and play time so Callie’s always included.

Birthdays tend to be bittersweet for our family. It was around Callie’s first birthday that she wacallie-dollss diagnosed with SMA. With each year, we’ve watched her personality and intellect explode with curiosity as her body has grown more and more fragile.

We’re grateful that Callie has reached this birthday, and we are looking forward to the next.

Our school girl

Callie started kindergarten at the beginning of August. It was a very exciting, stressful and emotional transition. It was hard to leave Child Enrichment at First United Methodist Church. And it was especially difficult to leave Ms. Emily, who’s been with Callie, essentially one-on-one, for the past three years.

We always knew Callie was safe and happy with Ms. Emily around. We could never thank her enough for all the love and protection she gave Callie.

Callie at the fair

Callie enjoys a magic show as her kindergarten class visited the Dixie Classic Fair in Winston-Salem earlier this month.

Everyone who knows Callie was apprehensive about her going to kindergarten. It’s not easy for people to reconcile that a child who has normal cognition and an outgoing personality can be so medically fragile. We had to work for several months to get Callie a one-on-one nurse at school. Callie requires frequent vital sign checks and constant attention to her fatigue and respiratory status, as she can decompensate quickly.

Callie doesn’t trust people easily, so it was a relief when we realized that Callie’s kindergarten teacher, Ms. Madison, and her nurse, Ms. Tee, were going to work out wonderfully. The administration and staff at Callie’s new school have also worked hard to help make her transition to kindergarten a success. Callie instantly made friends in her class and by the third week of school, she could attend the entire day without Nathan or me there.

Earlier this month Callie’s class had its first field trip, and Callie was very excited to ride the school bus for the first time as her class traveled to the fair. It’s great to see Callie fully participate in activities with her classmates.

Callie has a full life, and kindergarten is a big part of it. Making that possible requires the time and expertise of a variety of people: teachers, therapists, nurses, custodians, friends, administrators, lunchroom staff. There are people we have never met who take care of details that make school possible for Callie. We are grateful for everyone.

 

Wedding fun (and other news)

Alicia and Callie

Alicia, the bride, and Callie before the ceremony.

The event of the spring for our family was my sister’s wedding. Alicia got engaged last August and asked Callie if she would be her flower girl. So from August until April 19, when she started down the aisle in Nathan’s arms, flower basket in hand, she talked constantly about her upcoming job.

And boy did she relish her role! With a happy, yet serious, smile on her face, she dropped the petals one by one—on her way in and out of the ceremony.

Callie and Nathan

Nathan helps Callie, the flower girl.

The wedding couldn’t have been at a better time because Callie has had several illnesses this spring—some before and some after the wedding. She would’ve been heartbroken if she had missed the wedding.

As always, those illnesses took a toll on our family. We’ve been concerned because she’s never had so many problems in such quick succession. With each illness she becomes weaker and as a result, more vulnerable to complications. She finished her most recent course of antibiotics a week ago, and we’re anxious to see her return to her typical strength.

For now, we’re looking forward to our extra time together this summer before our big girl heads off to kindergarten in the fall.

5 on the 5th

Today Callie is officially a 5-year-old! And she’s certainly proud of it. She talks constantly about all the big-girl things in her life — soon she’ll get a special big-girl bed; we take her to the potty like a big girl; and she’ll start kindergarten this fall.

Callie's 5th birthday

Callie opening her birthday presents.

Last year on Callie’s birthday, she was starting to get significantly ill. We’re so grateful that we’ve had another year with her. But in all honesty, there is always a sadness we feel, particularly during celebrations.

Callie asked for a bicycle this year, thinking she could ride it. Then she asked for crutches, thinking they would help her walk. Our oldest son Isaac, who’s 12, asked us to look on the Internet to see when a cure is coming for SMA.

But oddly enough, this disease has also brought us joy. The joy of listening to Callie interact with her nurses who come to care for her at night. The joy of seeing her 3 brothers naturally adapt whatever game they’re playing to accommodate her. These are things we never would’ve known without SMA.

In Callie’s 5 years, we’ve learned that sadness and joy can both exist at the same time. And once again, we’re grateful for this time.

Happy Birthday Callie-girl!