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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.

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.

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.

Sick, tired, and improving

On Monday we noticed Callie’s heart rate was high. She started running a slight fever so we took her to the doctor. He noticed the beginnings of an ear infection and prescribed antibiotics.

That was Monday. On Tuesday night Callie’s fever spiked to 103.0 and her heart rate was twice as fast as usual. On Wednesday the antibiotic started working and her symptoms started to improve.

When Callie is not sick it’s easy to forget about SMA a little. But the “beginnings of an ear infection” have kept her home for almost a week. She’s been pale, tired and even says she doesn’t feel like going to preschool. Somehow we’re always surprised that she has so little reserve.

But she is doing better. She is resting, has a good appetite and, of course, is one happy little girl.

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.

Getting mobile

Callie got her very own power wheelchair a few days ago. We’re still working on her driving skills.

Earlier today she wanted to go outside to play with her brothers, so we strapped her in and let her go out. One disclaimer about the video below: It’s our cat Bullet who is licking himself.

Thanks to Tim and Ginger Moore for building our new ramp; to Kristy Bateson, Callie’s physical therapist, who has worked over a year to help Callie get this chair, even though Callie ran over her toes a few times; and to Austin Elliot, our power mobility rep, who made sure the entire process went smoothly.

Two years ago

Two years ago, I had finally recovered from a year-long illness and our family was getting back on track.

Our oldest boys, Isaac and Ezra, were attending a Spanish immersion school. They had become conversationally fluent in Spanish and we were glad, knowing this would give them a step up in whatever career they chose.

Peter and Callie were just 2-1/2 and 1 year old respectively. We knew they were our last babies, so even though life was chaos, we enjoyed it.

Nathan and I were looking forward to renewing our goal of taking a short trip together each year. Kid-free!

Our family read a lot of books and we had chosen not to own a television.

That was our life two years ago, before we had heard the words Spinal Muscular Atrophy. Callie’s SMA diagnosis two years ago today has created a new kind of life for us now.

We pulled our older boys out of the Spanish immersion school to have them in a school closer to home. Being bilingual would be nice, but the simplicity of having them closer to home was more important. We have them in counseling to help them cope with stress at home, and to help guide them through the inevitable grief of losing their sister.

We have a TV, and it’s on a lot. Callie has the cognition of a 4-year-old, but she has the gross motor strength of a 1-month-old. Simply giving her a toy to play with isn’t feasible.

Nathan and I can’t both be away from Callie for more than a few hours, which means that the next trip we take together will be possible only because Callie won’t be here anymore.

So 2 years later, our goal for each day is always the same — keep treading water, and don’t think about tomorrow.

Feeling better

Yesterday evening Callie started acting more like herself, and by this morning we were starting to think she might be getting better.

Today Callie’s pediatrician assessed her and listened to her lungs. He said her lungs sounded better than they had sounded Wednesday.

So we’re now confident enough to say Callie is getting better. She’s still sick and very weak and vulnerable, but it seems she’s improving.

It was very warm here yesterday so Callie was able to get outside for some fresh air. And this morning Callie’s friend Hollis stopped by to visit. Callie was very excited about that.

Thank you for all your thoughts and prayers for Callie.

Callie is sick

This past weekend, Callie developed her 2nd or 3rd cold in a year’s time. We went to her pediatrician on Monday and he heard a little fluid in her lungs and discovered a whopping ear infection. We started her on an antibiotic and were relieved that this was something that was treatable. Between the antibiotic and her aggressive pulmonary therapy, we knew we’d have this licked in no time.

Then yesterday evening Callie’s status worsened. Today we went to the doctor again and she’s developed aspiration pneumonia. This is one of the most dangerous conditions with SMA. Since SMA affects all muscles in the body, her muscles used for swallowing are weakened as well. So food and drink can inadvertently pass into her lungs rather than into her stomach.

We’ve started her on another, stronger antibiotic and several other medications to help with respiratory function and comfort.

As always, we don’t know where this will lead. All we know right now is that we have a happy little girl who’s very sick and very loved.