Author Archives: christygolden

Happy 12th!

*Callie and Peter enjoy playing together.*

Callie is 12 years old.

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.

birthday cake — *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.

We’re home

Aside from needing a small IV fluid bolus yesterday evening, Callie had a great night and we were home by lunchtime today.

Callie was in so much pain prior to the surgery, especially in the last 3 weeks. We’re already seeing an improvement in her quality of life, and that brings us great joy.

G-tube surgery today

Callie had her surgery to close her g-tube site today. Everything went as planned, and she’s spending the night recovering in the hospital. If everything remains stable, we should be going home tomorrow.

We’re very grateful to everyone on Callie’s medical team. The surgeon found some unusual tissue damage in the area, which was probably one of the reasons Callie was having so much pain when she had the g-tube, but everything’s repaired. It’s nice to be moving forward again.

Thanks to everyone for the prayers and kind words as we navigated the uncertainty of the past few months. We’re very proud of Callie and can’t wait to get her home and back to her normal routine.

Tubeless

Some of you know we’ve been having difficulties with Callie’s g-tube for almost two months now. And truthfully, it’s been giving us trouble for about a year, but we’ve always managed to find solutions.

*Callie with her cat, Gracie, who always stays close by to provide love and support.*

Last month, after trying different types of tubes, different sizes of tubes, different positioning, and different skincare strategies, it became clear we were out of options. Callie’s scoliosis is so severe the g-tube was being pulled under her rib cage. This was causing her almost constant pain, even though she rarely complained about it. So last week, we had Callie’s g-tube removed. We hope the site will close on its own, but we’ve scheduled surgery for a couple weeks from now in case that doesn’t happen.

We anticipated this — and Callie has been the biggest advocate for getting the tube permanently removed — so Callie has learned to take all her medications by mouth, and she is keeping up with her necessary hydration. Callie even swallows pills whole. I know plenty of adults who don’t swallow pills well, so we were impressed when she learned to time her swallowing to alternate with the back-up respiration rate on her bi-pap so she doesn’t choke.

This has not been an easy time for any of us. Callie’s g-tube has been one of her critical lifelines over the years. Having access to it has saved her life more than once when she was too sick to take medications by mouth. However, Callie has always faced life with more bravery than we could muster. And she’s faced this situation with the same bravery — she fully understands how important this g-tube has been in her survival, just like she understands surgery puts her life at risk.

She’s never wavered in her confidence that this is the right path for her life. Nathan and I always make the final call in every aspect of Callie’s medical care, but we also consider her wishes. This decision also has the support of Callie’s medical team at Duke and her palliative team at Brenner’s.

Even though Callie has shed a lot of tears over the physical pain she’s been in, she’s maintained her sense of humor throughout this entire ordeal. She and Nathan have a penchant for making up silly lyrics to well-known songs, and one the latest tunes around our house has been “another tube bites the dust.”

The special needs-coronavirus connection

Many people have asked how our family’s been doing during this coronavirus scare. We’ve been doing very well. In some ways, our life isn’t much different. Some things are more difficult — Callie’s going stir crazy because she loves going places. But life is also easier — because we can’t go places.

Going anywhere with Callie takes tremendous physical effort and mental planning. Not long before the shelter-in-place order, Nathan stayed home from our Wednesday night church dinner and classes a couple of times so he could get some work done. It took me and all three of our boys to survive those three hours.

callie peter in class — *Peter and Callie holding down their end of the table in class at church.*

Our two older boys unloaded a special activity chair (about 75 pounds) from the back of our van and rolled/carried it downstairs to the church dining area while Peter helped me carry some equipment (about 25 pounds) and I pushed Callie in her stroller (one she uses for riding in the car) with another 25 pounds of equipment on it.

Callie and Peter attend a class after the meal which meant it was time for more logistical adventures. The boys helped carry equipment as I pushed Callie in her activity chair. There’s a door at the top of the wheelchair lift that connects to the next building where Callie’s class is located. Since that door was locked, one of our teenagers ran around the long way to unlock it from the other side. The boys then went to their youth group as I got Callie settled in for her class.

After class I read a “Warriors” book to Peter and Callie while we waited for the older boys’ youth group to finish so they could help get us all home. They carried her activity chair and equipment downstairs while I carried Callie and put her back in her stroller. The boys put the activity chair in the very back of the van while I lowered the ramp and pushed Callie in. We strapped her chair down and then drove the one mile to our house and did everything again in reverse. This is why Nathan and I say that if someone spent a day in our life they would never wonder why we were late to anything.

callie outside in powerchair — *Callie loves roaming the neighborhood in her power chair.*

Being home so much has given us a break from this hectic brand of normal. But Callie misses going to school, even as she and Peter have enjoyed the extra time together. They have evolved into what they call their “morning routine” — watching “Little House on the Prairie” during breakfast; playing Minecraft; having a snack; getting some schoolwork done. That’s followed by lunch while watching a movie and then a little schoolwork if we’re feeling extra motivated, then time playing outside.

Callie can still use her power chair for brief periods of time, and she thoroughly enjoys it. Nathan always has to be the one to take her outside because she’s a daredevil and it causes me major anxiety. I prefer to sit inside and pretend I don’t know she’s flying down the street.

In some ways, special needs parents are already set up for coronavirus living: Parents don’t have much of a life of their own; health is not a guarantee and your entire life is suddenly dictated by a disease you can’t control; flexibility and innovation are essential. I think many people are getting an inadvertent glance into a special needs kind of life.

club rules — *Callie and Peter wrote these rules for their outdoor gathering space. “Bugzly-bucks” is code for their two older brothers.*

How do you make a good life when everything is so limited? You figure it out through trial and error.

How do you enjoy the day when you have no time to yourself, deadlines to meet, people to feed, errands to run (when you can’t take everyone with you but you also can’t leave them at home) and wondering if every little sniffle could be deadly? You learn what actually matters in life and let go of the rest.

How do you hold down a job at home while also being a full-time caregiver? You mix work and caregiving together (as Nathan does) and do them simultaneously, around the clock, at least 16 hours a day, six days a week.

How do you find your way back to normal? You realize that “normal” has changed and you have to move forward even though you’re still trying to get your bearings.

How do you know what to do when everyone has an opinion and what one doctor says is the exact opposite of what a different doctor says? You make your decisions out of love, trusting you’re doing the best you can with the information you have.

This is how our family has lived for over a decade. It’s exhausting, painful, overwhelming, and stressful. But it’s also possible. And somehow, it’s better than we thought it ever could be.

Double digits!

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 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 picture of our cat Gracie — Callie painted a portrait our cat Gracie. Gracie wasn’t terribly impressed.

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.

An autumn update

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.

Wrapping up another year

Callie with one of her best friends, Ella Rose.

Callie just finished third grade. It was a good year, with the exception of shedding tears over math.

The kindness of children who are in Callie’s life always amazes us. Everyday, a group of girls has recess inside with Callie instead of going outside to run around on the playground with other classmates.

The girls play with mini Lalaloopsies, draw, or play teacher together. Friendship is one of the biggest blessings in Callie’s life.

Callie and her teacher, Miss Packer.

There were bumps along the way this school year. In December and January, Callie completed the four loading doses of Spinraza and we ultimately decided not to continue with the treatments.

Nathan and I didn’t see any improvement in Callie’s strength or stamina, and we were putting Callie at risk with every treatment, which was administered by spinal injection.

We have always believed Callie should have a say in decisions that affect her life. After asking her on several occasions if she was sure she wanted to stop the treatments (something she’d been begging to do after the first injection), she finally said, “I can’t do that [Spinraza] for the rest of my life.”

It’s her life to live, and we’re grateful for the peace God has given her heart.

In February, after her ninth birthday, Callie got what we think was the flu with recurrent pneumonia. She stopped eating and, for a couple days, was withdrawn and not very interactive.

After an uncertain couple of weeks, Callie began improving, and we’re grateful for the additional time we’ve been given with her.

As always, Callie is making the most of her life. She’s looking forward to a busy summer:

We recently got a trailer that hitches on to the back of Nathan’s bicycle for Callie to ride in. Not being able to ride a bike has always been one of Callie’s greatest heartbreaks, but she was determined to do the next best thing. She loves it.
We had Vacation Bible School this past week, something that’s always one of the highlights of her summer.
The minute she heard about a cheerleading camp, she wanted to be signed up, even though it’s a new place where she doesn’t know anyone.
We’ll be making a trek to the beach where she’ll no doubt want to stay outside all day.

So many people help give Callie the high quality of life she has.

Callie with her nurse, Alisa.

Her school nurses, Alisa and Marsha, enable Callie to attend school regularly. Her teacher, Miss Packer, encouraged Callie through her tears and all.

Callie’s older brothers play such a significant role in her life. The grief of her diagnosis has gotten only more intense for them as they’ve gotten older.

Callie with her nurse, Marsha.

But they’ve never distanced themselves from her — on the contrary, they play on the beach, pull her on a snow sled, have tea parties, visit Callie’s made-up universe called Twintopia, and cheer her on in everything she does.

Like any other child, Callie will get her feelings hurt or feel left out. She can get so tired that she can’t play like she wants to. But it never stops her from embracing life.

We take each day as it comes, and as long as we’re seeing her smile, everything feels okay.

Callie and her brothers at Carolina Beach.

Spinraza update

Callie has had three of her four loading doses of Spinraza. The second and third doses went well, although Callie had to stay overnight the third time around because her vital signs weren’t stable enough to go home.

We thought she would panic when she heard she’d be staying overnight, and her panic would have made her respiratory status even worse. But she actually said she needed to stay. For us, that’s evidence that God provides peace in all our hearts when it’s needed most. She steadily got better during the night and we went home the next day.

She’ll receive her next dose at the end of this month. But before then, she and I are taking a girls’ trip to the mountains (with Nathan coming along as well). Callie and I have a couple books to read together, and we plan to do what we always try to do — enjoy whatever each day brings.

Spinraza dose #1

Callie received her first dose of Spinraza this past Wednesday. Although there were no complications from the procedure, things didn’t go as planned and it was a traumatic experience.

After Spinraza was approved by the FDA a year ago, Nathan and I didn’t immediately pursue the treatment. We thought a lumbar puncture (the required route for the administration of the medicine) would be too stressful for Callie. Her body was so damaged by SMA already, there was not much reason to believe the benefits would outweigh the risks.

Eventually, we decided we should involve Callie in the decision. Yes, she’s only 8 years old, but it’s her body and her life. Anyone who knows Callie, or has kept up with our family, knows she’s terrified of all medical things. But she still wanted to try this procedure, knowing it would be uncomfortable and that there was a chance it might not even work. We were sure to point out that even if it did work for her, she still wouldn’t be able to stand or walk. We explained it might help her swallow better, hold her head up better and maybe breathe more easily.

We knew she would be anxious and upset — that’s simply how it is with most medically fragile children. But after hearing her cry for hours leading up to the procedure, then listening to her scream, “Why am I doing this? I just want to go home!” when the radiologist punctured her back, it was a crushing reminder of why we’ve chosen minimal medical interventions.

Callie will need 3 more doses of the Spinraza before we’ll know for sure whether it will help her. Despite her protests, we plan to have her complete this first cycle, with a sedation plan firmly in place before her next dose to minimize her discomfort.

We’re grateful for everyone’s support and will post more updates during this treatment cycle.