Author Archives: admin

Callie’s online memorial service

Callie’s memorial service began at 3 pm Saturday, April 24. The service was not open to the public but the church welcomed everyone via live stream.

You can find the video on First United Methodist Church’s live stream account here. You can also see the service in the box, below.

We’re especially grateful to our pastors, Debra Swing and Willis Greene, for organizing such an appropriate celebration of Callie’s life. The music in the service was a gift from Brock and Lauren Smith, Callie’s uncle and aunt, and Ben Smith, Callie’s cousin. Songs: “Untitled Hymn” written by Chris Rice; “Morning Has Broken” with text by Eleanor Farjeon.

The service also featured a table of photos from throughout Callie’s life. You can click on the photos below to see larger images.

We have read every Facebook comment, every comment on this blog, and every card that we have received since Callie’s passing. Thank you to everyone for sharing so much love and support.

Callie is in Heaven

“I thank my God upon every remembrance of you.” Philippians 1:3.

This morning, our precious Callie died peacefully in our arms at home from Spinal Muscular Atrophy. In the end, Callie’s approach to death was the same as her approach to life: She embraced it. And she was so very brave on her journey to Heaven. Callie was loved by many and we miss her more than words can say. More details about a service will be posted later.

Happy 11th Birthday!

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.

Happy 11th to our girl.

A progress report

Callie is thrilled to be home, and although she still has a long way to go, we began to feel optimistic today that she would be able to recover from this bout with pneumonia.

She is still too weak to breathe on her own for very long. She depends on her Bipap machine for breathing support. She also could not survive without the machine that helps her cough.

callie-gracieToday while resting in bed her cat, Gracie, jumped into her bed to curl up beside her. Callie was glad to have the company.

We expect it will take a few weeks for Callie to return to her full strength, but things seem to be going in the right direction.

Once again, we are grateful for the love, support and prayers that have been shared with Callie and our family during this illness.

Another night in PICU

Callie is still in the Pediatric Intensive Care Unit at Brenner Children’s Hospital. The IV antibiotics seem to be helping, although her anxiety has been making it difficult for her to rest. The good news is that she seems to be overall better today than she was yesterday.

Breathing is still difficult. Throughout the day she has needed her Bipap machine, along with supplemental oxygen. Her temperature climbed to around 103 degrees F during the night but has not been higher than 101 today.

She’ll be in intensive care for at least one more night. We will post again tomorrow to let everybody know how she’s doing. We appreciate the prayers and well wishes for Callie and our family.

In the hospital

Callie started feeling bad Tuesday and has continued to get worse each day despite antibiotics, extra therapy and rest.

We’d done everything we could to help her recover at home and she still was getting worse. So today we brought her to Brenner Children’s Hospital in Winston-Salem where a chest X-ray confirmed that she has pneumonia.

She will be staying in the hospital tonight and has been getting IV antibiotics. We expect to see some improvement within 24 hours. We also hope that she is able to rest, which, along with medicine, is essential to her recovery.

We’ll post another update by tomorrow night.

A difficult weekend

Callie has had a rough weekend. What started as extreme fatigue late last week seems to have turned into aspiration pneumonia.

We’re thankful to have good guidance from Callie’s doctors and nurses, access to medicine and medical equipment and the support of friends and family. As usual, our goal is to help Callie rest and recover at home.

We’ll post more updates as things change.

Good news

Callie is getting better. She has been stronger for the past few days. She has been awake more and was able to go to school for a few hours at the end of last week. We hope she’ll regain her full strength this week.

We’re still doing breathing treatments, but she finished her antibiotics today. Aspiration has been less of a problem the past few days. Her doctor saw her a few days ago and said her lungs sounded a lot better.

We’re grateful and relieved.

A health update, part 2

Callie is still sick, but we’re hopeful she is getting better. Today, her pediatrician said her lungs sounded much better than they sounded Thursday.

We are grateful for this good news because there have been times in each of the past few days when we thought Callie might not fully recover from this sickness.

On Thursday night she suddenly was unable to breathe properly. With help from her doctor, nurses, bi-pap machine and medicine, she got through that frightening hour. Both her pediatrician and her pulmonologist (who was in touch with our pediatrician) thought Callie possibly had a mucus plug blocking the flow of air in one of her lungs. We also know that fatigue was a big factor.

Since Thursday Callie has slept a lot. When she’s not asleep, we often are using cough assist, chest physiotherapy, breathing treatments, oxygen or medicine to control her symptoms. These therapies help Callie rest. Rest is key to her recovery.

Callie continues to aspirate on food and drink. Since she’s on two antibiotics, she should be safe from infections that can result from aspiration. Over the next week we hope she will regain enough strength to keep from aspirating as she prepares to go off her antibiotics.

Right now the only way to prevent aspiration is to stop feeding Callie orally. But telling Callie she can’t eat when she says she’s hungry would detract from her quality of life.

We’ll post another update in a week or so. We are thankful for the prayers, thoughts, comments and e-mails, and the invaluable support from Callie’s entire health care team.

A health update

Thanks to everyone for all the birthday and get-well wishes for Callie.

She had a fun birthday on Tuesday, but since then she has been feeling worse.

Callie's birthday cake

Callie with her birthday cake. (And Peter singing in her ear.)

She went to the doctor Tuesday afternoon and got an antibiotic to fight the beginnings of a sinus infection.

When Callie gets sick, she’s a lot weaker and more prone to aspiration, which is when food, drink or secretions go into the lungs instead of the stomach. It’s possible that Callie aspirated Wednesday because by that evening she had gotten really sick with fever and cough.

Today, her doctor added a stronger antibiotic, steroids and breathing treatments.

We hope this new mix of medicine, along with fluids through her G-tube, will be what Callie needs to shake off this sickness. In the meantime, she is resting at home.

We will post another update in a few days.