Author Archives: Nathan

Happy 8th birthday Callie!

Callie enjoying our big snowstorm last month.

Callie enjoying our big snowstorm last month.

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?

callies-cakeOr 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.

An update

Callie has been doing well. She’s had several months of relatively good health, and we’ve been enjoying this time.

Though she hasn’t had a major health crisis, Callie’s physical weakness is a way of life. She depends on us for almost all of her day-to-day activities. She can still feed herself finger foods such as blueberries. She can still play with small toys.

But in most other ways she is like an infant. We carry her around and support her head. We dress her. Although she is 3-1/2 years old we don’t imagine she’ll ever be potty trained simply because of the difficulty of sitting up on a toilet.

We have nurses who spend the night with Callie more often than not. We enjoy the break, and Callie loves having new adults around to read her books and talk to her. It usually takes a new nurse a few nights to learn how manipulative and cunning Callie can be as she thinks of new ways to avoid having to go to bed.

Most days around our house include a viewing of the Disney movie Tangled, which is a modern version of the Rapunzel fairy tale. Callie insists on watching the movie at least once a day. She knows every bit of the dialogue as well as the songs. She even hums along with the score. Our three boys know the movie just about as well as Callie does.

Callie at the beach
Callie on the beach.

Our family had a great time at the beach in June. It was our first vacation since Callie’s diagnosis more than two years ago. Callie liked sitting beside the ocean, feeling the waves lap around her seat.

We soon should be capable of carrying Callie’s power wheelchair on the road. It’s been a long process, but we now have a vehicle big enough to carry Callie’s nearly 300-pound chair, and we have a wheelchair lift installed on the back of the vehicle. We’re now waiting on some waterproof tie-downs to hold the chair in place on the lift.

Our primary goal for Callie is that she enjoys her life. Right now, with the help of so many people, we are achieving that goal.

 

Taste of the Town

We’re grateful for the support of Hospice of the Piedmont, whose staff is helping guide us through Callie’s journey with SMA. On Aug. 21 Hospice will host its annual Taste of the Town fund-raiser. We plan to attend, and anyone else is welcome. You can learn more here. Tickets are limited, but they’re still available at any High Point Bank branch.

Race day pictures

We were so proud of Team Callie this morning at the North Carolina Marathon.

We’ll post more details about the team and the total amount of money it raised for SMA research soon.

Here’s a collection of photos from the event.

Any team members who have more photos can e-mail them to hello@calliegolden.org and we’ll add them to this gallery.

Thanks to all team members and donors who made this morning possible.

 

Strength of a team

Six months ago I thought I would be running a marathon on Nov. 19. Three months ago I realized a half-marathon was more likely. Now it’s clear that I will be walking much of the 5K as Team Callie takes part in the North Carolina Marathon to raise money for spinal muscular atrophy (SMA) research two weeks from today.

These shrinking goals have fed a growing sense of failure. I’ve wondered why it’s so hard to go out and run a few times a week. Can’t I do that for Callie and the thousands of other children who live with SMA?

It sounds easy enough. But I have not done it. There are reasons. The physical and emotional energy Callie’s care requires takes its toll on our family every day. We’ve been overwhelmed. We’ve been sad. Callie’s not a baby anymore. It’s more obvious to others — and now to her — that she’s different. She’s still losing abilities. Now she’s losing her head control. We’re always tired.

But that’s life, and I should be able to deal with it and make this happen, I’ve thought as each day has passed without me making it happen.

Christy and I were talking about this the other day and we realized something incredible. As my sense of personal failure has grown, Team Callie has grown from 1 person to about 30 people. Team members have been training for months and raising money for SMA research – more than we could ever hope to raise alone. Because of the team, more people know about SMA today than yesterday.

I wish I had done better, but Team Callie’s accomplishments have helped me remember that this project never was about me, whether I run 2 miles, 13.1 or 26.2. It’s about Callie and everyone else with SMA. It’s about the support that comes from family, friends and anyone else who’s willing to walk, jog, run and ask for money for a cause. Thank you, Team Callie.

Back in the hospital

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.

Callie’s life with a G-tube

Life with a G-tube has been going well for Callie since she returned from the hospital a few weeks ago. Now that she’s getting more calories we have noticed a big difference in her energy level and her attitude.

She has been talking more, and she enjoys typical 2-year-old games such as peekaboo. She also throws typical 2-year-old fits.

Callie loves preschool and she has re-started her weekly physical therapy session. We’re working to re-start her aquatic therapy within the next few weeks.

This past Tuesday Callie saw her pulmonologist and her surgeon at Duke. The pulmonologist was pleased with Callie’s lung function tests, and we’ll soon be collecting data about her oxygen levels at home.

Callie’s surgeon was also happy with how she is healing. She is having a minor skin reaction to having the feeding tube present. The surgeon prescribed a topical medication to help with that. We’ll have to take Callie back in the next 4 to 6 months so the surgeon can change her feeding tube, a routine procedure that does not require sedation. Callie will continue to need her tube changed and adjusted throughout her life as she grows.

We’re hoping to attend the annual FightSMA conference in Washington, D.C., this spring, where Callie’s pulmonologist will be on the doctors’ panel. At last year’s conference we learned a lot about SMA and ongoing research to find a treatment or a cure.

Thank you for reading our updates and for your interest in Callie’s condition.

 

Great to be home

Callie’s been home from the hospital for a week, and we’re grateful to have a more normal life for her and the rest of our family again.

In the past week we’ve settled into a plan for Callie’s nutrition.

While she’s asleep we’re using her new G-tube to give her calorie-rich formula and fluids. While she’s awake she eats and drinks small amounts orally, based on her appetite.

She is not yet getting the calories she needs, but we’re slowly increasing the volume in her tube feedings based on how well she tolerates them.

We’re taking this process a lot more slowly than we did in the hospital, where tube feeding was making Callie miserable.

It’s been great to have Callie back home. She was very excited to be back in preschool this week, and we hope to have her back in physical therapy as soon as possible.

We’re planning to get back on track with thank you notes, too. But for now we’d like to thank everyone who has offered thoughts, prayers, money, food, cards, notes, child care, toys and other kinds of support. You’ve all helped keep us going through the past month.

Still not home again

It’s been four days since Callie started getting nutrition through her new G-tube, and she’s still having a hard time adjusting.

She feels miserable with a stomach ache during and after her feedings, and it’s time to reassess the volume, calories, type of formula, etc., that Callie is getting.

So we’re still not sure when Callie will be able to come home.

The good news is that her surgery sites are healing well and that overall she’s in good health.

Out of surgery

Callie’s surgery today went well. She is now in pediatric intensive care recovering from the procedures. She is breathing on her own, with help from her bipap machine as needed. She’ll spend one night in ICU, then will go back to a regular hospital room tomorrow if things go as planned.

I carried Callie into the operating room and held her until she fell asleep. After the anesthesiologist released the medicine through her IV, Callie said, “Night night,” and went to sleep.

The surgery took longer than we expected, mainly because the surgeon discovered inflammation in Callie’s lower esophagus that was the result of reflux. He said it was really good that we opted for the Nissen procedure, which is designed to limit reflux, along with the G-tube, which was the primary reason for today’s surgery.

Her G-tube is in place and already has been used to give her pain medicine. Christy and I will post more updates as things change.

Surgery scheduled

Callie has had a great week. She is breathing and sleeping well, and she is happy. Callie remains in the hospital because she needs more nutrition than she can take in by mouth. Right now she’s getting nutrition through the PICC line she got earlier this week.

Callie is able to eat some by mouth, but she must take very small bites and can eat for only about 10 minutes before her swallowing muscles grow too tired. After that she is at a much higher risk for aspiration which, as we learned Sunday, can be very dangerous. Callie has not had anything to drink since Sunday except while in therapy.

With those kinds of limits on oral intake, Callie cannot sustain herself nutritionally. We hope that as she continues to recover from this recent illness her strength will increase and she will again be able to eat and drink as much as she needs.

But the reality of spinal muscular atrophy is that Callie will lose muscular abilities as time goes on. Chances are this will not be the only time Callie needs supplemental nutrition, even if she doesn’t need it on a regular basis.

So it has become clear to us that Callie needs a gastronomy tube (G-tube).  She is scheduled to have surgery this coming Thursday, March 17. While in surgery, Callie is also scheduled to have a procedure called Nissen fundoplication, which will help keep reflux under control. (Some tests last week showed that reflux would be a problem if Callie were to receive nutrients through a G-tube.)

We haven’t chosen this path lightly, and neither have Callie’s doctors and therapists. Christy and I are nervous about Callie undergoing and having to recover from surgery. But we also believe that after she recovers, Callie will be better able to maintain her strength and recover from illnesses since they won’t be exacerbated by a lack of nutrition. We believe she will be able to spend less effort on surviving and more on living.

Callie has enjoyed the cards, drawings, stickers, books and toys she has received in the mail this week. Thanks for your continued kindness, support and prayers.