Callie loves her new room arrangement because she has her own little cave beneath Peter’s loft bed.
She’s started doing a lot of normal tween things. She got a phone for Christmas and loves texting family members, playing (safe) online games with her school friends, and FaceTiming anyone she knows.
We recently rearranged Peter and Callie’s room so Callie’s bed can be partially under Peter’s loft bed. She’s enjoyed having her own space and decorating it to suit her. Turning her during the night has caused a few extra aches and pains since it requires crouching down — Nathan’s 6’4” by the way — but it’s nothing a little Deep Blue muscle rub can’t handle.
Callie’s continued to do well after having her g-tube site closed. The months leading up to that surgery in August were some of the most difficult we’ve ever had, so having that completely behind us has been a blessing.
Peter decorated Callie’s cake to feature our two cats. Ironically, one of the cats managed to lick the cake while it was cooling so we had to cut away a chunk of it.
We’ve also been blessed that Peter and Callie have been able to attend school in-person! Their small, Quaker school takes the health guidelines seriously and the students have the ability to socially distance themselves, so it’s been a successful year so far.
As always, we’re grateful for another year and for the love and support our family receives.
Today we celebrated Callie’s 11th birthday. She’s had a good year.
We’d like to share a few pictures. We took most of these today but have also added a couple from the past few months.
With her new old-fashioned Polaroid Instant Camera.With Gracie, Callie’s good friend.Opening presents today with brother Peter watching closely.Visiting her great-grandmother, Mimommie, this past fall.Her birthday cake today.Using her bi-pap machine to blow out the candles.
Callie keeps on keeping on. She’s 10-½ years old, a fifth-grader.
Callie and her mom, Christy, at “Toy Story 4” this past summer.
Ten years ago, when Callie was diagnosed with SMA, we learned the disorder would shorten her life. We didn’t receive an official estimate for her lifespan, but our most generous projections didn’t anticipate 10-½ years.
Callie has lived these years to their fullest. Sometimes we marvel at her spirit — the way she chooses to embrace her life despite her significant physical limitations. In so many ways Callie is a normal little girl who likes to crack jokes, eat pizza, play video games with her brothers, and study for her spelling tests.
But living her life requires a lot of support, both from us, her parents, and from a variety of other people. We’ve restructured our lives around Callie’s needs, and even that’s not enough. We need help from so many others to give Callie a full life.
So in the spirit of Thanksgiving, we’d like to share our gratitude to some of these people and groups:
Callie’s schools
Callie on a train at a school fair with her dad, Nathan.
Throughout Callie’s life, starting with preschool, we’ve had support from good schools. Leaders and teachers at all three schools Callie has attended have welcomed Callie and given her space to learn and express herself.
This year Callie started fifth-grade at High Point Friends, a Quaker school near our house. We walk her to school most days, and being a valued member of the class adds a lot to Callie’s quality of life.
We’re grateful to the Friends School — as well as Callie’s public elementary school, church-based preschool, classes at church, and the local Upward sports league where she cheerleads each fall — for looking beyond Callie’s obvious limitations and seeing the normal little girl inside the medical fragility.
Callie’s nurses
We’ve mentioned Callie’s nurses on this blog before. They have come and gone over the years, but we have a core group who know Callie and can anticipate her needs, giving her more control over her life and giving us a break from the demands of caregiving.
Other medical support & guidance
Over the years Callie has seen dozens of physicians, many of whom have been instrumental in guiding Callie’s care. As Callie’s condition and our approach to her care have evolved, we have seen fewer doctors, but we have consistently relied on a few. We’re especially grateful to Dr. James Anderson, Callie’s primary care pediatrician; Dr. Richard Kravitz, pediatric pulmonologist at Duke; and Dr. Savithri Nageswaran, pediatric palliative care physician at Wake Forest.
At this point Callie wouldn’t survive more than a few days without her bipap machine which supports her breathing. Her cough assist machine has also helped bail us out of several illnesses she wouldn’t have survived. A feeding pump keeps her hydrated. We’re grateful for Callie’s medical equipment providers and their staff members.
Callie also wouldn’t be alive without the medicine she takes to support her breathing. We’re thankful for Hospice of the Piedmont for its staff members, past and present, who have helped us make hard decisions about her care.
We’re also grateful for the state programs that help us pay for these services.
Family
Callie has three brothers. Twelve-year-old Peter is a constant companion who has never known life without Callie. Callie and Peter argue and tease each other sometimes, but ultimately they get each other. We joke they’re two for the price of one — if you get Callie, you get Peter. Even to the point of Peter gladly attending an all-girl candle-making party earlier this fall.
Callie, dressed as a cat, and her brother Ezra goofing off with our cat Gracie on Halloween.
Callie’s older two brothers, Isaac, 18, and Ezra, 16, have shared in the pain of her diagnosis and have experienced a different childhood than they would have experienced without Callie. They aren’t always happy about it, but Isaac and Ezra help with errands and housework. Callie’s also harnessed the power of candy and snacks to lure them into a number of tea parties. Callie loves and admires all three of her brothers for different reasons.
We live several hours from our extended families but we always know they’re available for support if needed. Callie looks forward to seeing her cousins, especially the babies, and she loves visiting all her grandparents, going to the beach each summer with Christy’s family, and getting together with everybody on Thanksgiving.
Flexible employers
Balancing Callie’s needs with the demands of everyday life has always been a challenge. We’re thankful to have jobs which allow for flexibility such as working from home and at odd hours and supervisors who understand we’re balancing difficult challenges along with work challenges.
Donations
Donations have helped us buy Callie a wheelchair-accessible van and other essentials. We’ve never been very active fund-raisers but we’re grateful for all the support we have received, from a benefit concert in my hometown of Ware Shoals, S.C., to the occasional people we don’t know who feel moved to give or to secretly pay for our dinner in a restaurant.
Early on we tried to do some SMA fund-raisers but quickly became overwhelmed by advocacy work. Still, people have given money to SMA research in honor of Callie.
This research has recently paid off with a couple new therapies which are making a huge difference for babies diagnosed with SMA today. No such treatments existed 10 years ago as we were learning about the realities of Callie’s condition.
An uncertain future
When people ask how Callie is doing, it’s hard to answer. We’re so close to Callie we don’t see the minor changes and her little losses in ability.
But when we see pictures from a year ago or step back and take a broader view, it becomes clear: Callie continues to grow physically weaker and more dependent on medical support to get through each day.
As we enter this winter, we’re worried. It takes only one cough, one sneeze, or a stuffy nose to put us on edge. The constant yo-yo of emotions is always hard for all of us, even when everything turns out okay.
We’ve never known from year to year how long Callie would make it, and we are grateful for not knowing the future. Uncertainty has given us space to let Callie grow and learn and become her own person.
Ultimately, all our gratitude falls in one category: thankfulness for more time.
Callie’s had a busy life since we last posted in the fall.
She’s continued to enjoy having a baby-girl cousin. Callie has regularly managed to claim first dibs on any holding and feeding of the baby.
Callie and Peter in the snow. We got about 15 inches in December.
We had a great Thanksgiving with our families in South Carolina, and Callie got her requested Lalaloopsy oven, a modern version of an Easy Bake Oven, from Santa.
We also had a really big snow in mid-December. Callie has always loved snow. She insisted on being outside as much as possible. She even went sledding. Things like that make me incredibly nervous, so I’m grateful that Callie has Nathan, who’s much calmer than I am. Otherwise, Callie would have fewer experiences that fall into the thrill-seeking category of life.
Callie and Peter spend a lot of time together.
Callie had a couple of health scares in December and January. We were never able to determine an exact cause. She didn’t have a cold or pneumonia. She was just extremely tired, had trouble with aspiration and began experiencing apnea (a pause in breathing) while she slept. Fortunately, adjusting her Bi-pap settings directly addressed this complication, and we haven’t had any trouble since then.
And on February 5, Callie turned 10 years old. This is a milestone many people, including us, weren’t sure she’d reach. At the same time, it’s difficult to look back and see how strong she used to be. She’s worn her Bi-pap all night for several years, but as recently as October she didn’t need it for the majority of the day. Now she wears it anywhere from 20 to 22 hours per day, and it seems she wouldn’t survive more than a day or two without it.
Callie’s not one to be slowed down or underestimated. She loves painting, homemade Rice Krispy treats, baseball, our new local ice cream shop, Wonderful Wednesday at our church, and Dragons: Race to the Edge on Netflix.
Occasionally she lets some of her heartache come through: Like a few weeks ago when she said, “If I could ride a bike, I would get one with a basket on the front. I’ve always thought it would be fun to carry things in it.” But she always comes around to embrace the brighter side of her life, and everyone around her can’t help but to follow her lead.
Early last week, we took Callie to see her pediatric palliative care doctor so we could discuss some problems Callie has been having the past couple of weeks. Callie had become extremely fatigued, needing naps and asking to wear her bi-pap during the day. Callie’s stomach was also hurting when she ate, but she didn’t have any other symptoms, such as a fever or cough.
Visiting Hogwarts at Harry Potter World in Orlando.
Callie naturally has some days when she’s tired, especially after having a lot of activity. We’d been to Harry Potter World with my parents as a special trip, but that was back in October. And despite all the wand waving, playing in the pool, and traveling, Callie had seemed okay during the trip.
As we were telling the doctor how tired Callie had been, she and Peter were up to their usual antics — pretending, laughing, putting on plays with the owls they’d just made out of construction paper with a volunteer in the waiting room.
On previous visits to this doctor, Callie hadn’t had any of her brothers with her. She cried and was apprehensive the entire time. The doctor enjoyed seeing this side of Callie — the side we see so frequently and the reason we were there for that appointment: We don’t want to see that joy diminish.
Callie with her new cousin, Olivia, the daughter of my younger sister and her husband.
Peter and Callie told the doctor all about their new baby cousin, Olivia. Callie was thrilled the new baby was a girl, and she immediately inducted Olivia into our “Girl’s Club,” which until then consisted of Callie, me, and our girl kitty. Peter wanted me to show the doctor the picture of when Olivia, at 6 days old, reached out to touch Callie’s face. The doctor was appropriately impressed, which only widened Callie’s smile.
Eventually we started discussing the reason for our visit. The doctor thinks Callie is probably not maintaining sufficient oxygen levels because of the compression on her lungs from her worsening scoliosis. As a result, she’s building up carbon dioxide (CO2), which causes sleepiness. The stomach pain is still mysterious, but we suspect it ties into the respiratory problems as well.
We developed a plan: more cough assist and bi-pap to help Callie clear more CO2 and an adjustment to her medication to help with the pain. So far, between keeping Callie on her bi-pap essentially all day and night, and adjusting her medication, we’re seeing an improvement in her energy level, appetite, and pain. In the meantime, the doctor said she would be reaching out to other specialists to see if they have any other theories or ideas.
Callie’s continuing to live the life she enjoys and is looking forward to visiting our families for Thanksgiving. Being the youngest of four children, she’s used to sibling arguments and having to present her case for what movie to watch, where to eat or whether to play with Lalaloopsy dolls or army men.
So she’s very pleased that she managed to “call” holding Olivia first, knowing her brothers will simply have to wait their turn.
Callie is 8 today! She’s very excited about the big day, just like any 8-year-old would be.
Days like this remind us how normal our lives are, despite the time and effort Callie’s care requires. We have support from so many people — nurses, people who have given money, Hospice of the Piedmont, co-workers who generously prepare a meal for us every week.
We are grateful for this help because it helps Callie live a life that is not defined by her diagnosis. Life seems so normal that, sometimes, when someone asks how Callie is doing, it takes us a second to recall the details of her daily challenges.
This sense of normalcy has been disrupted over the past six weeks, ironically, by a piece of very good news. The FDA on Dec. 23 approved a treatment for spinal muscular atrophy. The drug, Spinraza, could be available for Callie this spring or early summer. Had this drug been available when Callie was younger, it might have rescued her from the devastating effects of SMA.
Now, though, SMA has twisted her spine. She has contractures, subluxations, almost no muscle mass. She is weaker and more vulnerable than ever. She can sit up for shorter time periods. She depends on her bi-pap machine for breathing support every day. This medicine has arrived too late to prevent these effects for Callie.
But her spirit is so strong, and we’ve learned not to underestimate Callie’s determination. So over the past few weeks, we have been considering whether this new treatment could help Callie even in small ways. We know it won’t reverse the damage SMA has done to her body. But could it help her stay in her power wheelchair longer, giving her more independence? Could it give her enough strength to sit up longer, which could enhance her quality of life by allowing her to interact more with friends and family?
Or would the treatment only slow the progression of her condition, requiring her to endure more pain with little or no benefit to her quality of life? There are no simple answers.
Next month we have an appointment with a neurologist, and we’re hoping he will provide some more information to help us determine whether this new treatment would be good for Callie.
Until then, she’ll celebrate her birthday with food from Barberito’s, one of her favorite restaurants, and a cake with a snowman family on it that Callie helped design. This coming week she’ll go to school hoping the cafeteria will serve her favorite lunch, beefy nachos. She’ll watch her favorite shows, Sofia the First and Phineas and Ferb. She’ll draw pictures, tell jokes, and live her life.
Callie is in second grade this year. Her nurse during the school day knows her well, and Callie has the same teacher her 8-year-old brother Peter had last year, so the transition has been smooth.
Callie’s spring and summer were filled with activities. The highlights for her were a trip to Carolina Beach in May and Vacation Bible School at our church in July. Callie loves to sing, even though it can make her really short of breath. We love to listen to her sing because she has such a classic, out-of-tune, child’s voice (video below).
This fall, just like last fall, Callie is a cheerleader. At first, we weren’t sure if it was worth the risk because she’s weaker and has more difficulty maintaining a comfortable position than she did last year. But not long before the season began, Callie said, “Why haven’t you signed me up for cheerleading yet?”
There’s always an undertone of anxiety that feels as if it’s settled in our hearts permanently. It doesn’t take much – Callie needing oxygen at night; seeing a tired look in her eyes – for it to rise to the surface. We constantly remind ourselves that this is her life, and no matter how tired she is, she insists on living it to the fullest.
We’re going back to Carolina Beach again soon. Callie and Peter made a list of things to do while there. Some of the highlights include eating dinner on the balcony, watching the sun set, sleeping in the bunk beds, getting up at dawn, eating bacon and eggs, and drawing in the sand. With the exception of getting up at dawn, we’re looking forward to it.
Callie turned 7 years old today. Zaxby’s was her choice for dinner, followed by a strawberry cake with a snowman on top.
We’re glad to have reached this milestone. With each birthday comes an awareness that it could be her last. We feel that very acutely this year. We’ve seen some recent changes in Callie’s overall strength and fatigue levels, and her last illness was the most severe we’ve seen in years.
We’re so grateful for the time we’ve been given, and we’re proud of her determination, spunk and kindness.
Yesterday, 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.
Despite 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 was 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.
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.
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.
Or would the treatment only slow the progression of her condition, requiring her to endure more pain with little or no benefit to her quality of life? There are no simple answers.
