Six!

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.

Our school girl

Callie started kindergarten at the beginning of August. It was a very exciting, stressful and emotional transition. It was hard to leave Child Enrichment at First United Methodist Church. And it was especially difficult to leave Ms. Emily, who’s been with Callie, essentially one-on-one, for the past three years.

We always knew Callie was safe and happy with Ms. Emily around. We could never thank her enough for all the love and protection she gave Callie.

Callie enjoys a magic show as her kindergarten class visited the Dixie Classic Fair in Winston-Salem earlier this month.

Everyone who knows Callie was apprehensive about her going to kindergarten. It’s not easy for people to reconcile that a child who has normal cognition and an outgoing personality can be so medically fragile. We had to work for several months to get Callie a one-on-one nurse at school. Callie requires frequent vital sign checks and constant attention to her fatigue and respiratory status, as she can decompensate quickly.

Callie doesn’t trust people easily, so it was a relief when we realized that Callie’s kindergarten teacher, Ms. Madison, and her nurse, Ms. Tee, were going to work out wonderfully. The administration and staff at Callie’s new school have also worked hard to help make her transition to kindergarten a success. Callie instantly made friends in her class and by the third week of school, she could attend the entire day without Nathan or me there.

Earlier this month Callie’s class had its first field trip, and Callie was very excited to ride the school bus for the first time as her class traveled to the fair. It’s great to see Callie fully participate in activities with her classmates.

Callie has a full life, and kindergarten is a big part of it. Making that possible requires the time and expertise of a variety of people: teachers, therapists, nurses, custodians, friends, administrators, lunchroom staff. There are people we have never met who take care of details that make school possible for Callie. We are grateful for everyone.

Wedding fun (and other news)

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.

5 on the 5th

Today Callie is officially a 5-year-old! And she’s certainly proud of it. She talks constantly about all the big-girl things in her life — soon she’ll get a special big-girl bed; we take her to the potty like a big girl; and she’ll start kindergarten this fall.

Callie opening her birthday presents.

Last year on Callie’s birthday, she was starting to get significantly ill. We’re so grateful that we’ve had another year with her. But in all honesty, there is always a sadness we feel, particularly during celebrations.

Callie asked for a bicycle this year, thinking she could ride it. Then she asked for crutches, thinking they would help her walk. Our oldest son Isaac, who’s 12, asked us to look on the Internet to see when a cure is coming for SMA.

But oddly enough, this disease has also brought us joy. The joy of listening to Callie interact with her nurses who come to care for her at night. The joy of seeing her 3 brothers naturally adapt whatever game they’re playing to accommodate her. These are things we never would’ve known without SMA.

In Callie’s 5 years, we’ve learned that sadness and joy can both exist at the same time. And once again, we’re grateful for this time.

Happy Birthday Callie-girl!

Chipper again

Good news — Callie is back to her chipper self. She pulled through what we hope has been the worst of this illness.

Callie has always been a happy girl, and she’s never lost her spunk even when she’s sick. But each time she’s ill it’s a reminder of how incredibly fragile she is. We called the Hospice nurse out to our house twice on Sunday night because she was doing so poorly and we weren’t sure what to do. At some point, there really wasn’t anything else we could do except wait things out.

Fortunately this morning, after having slept the vast majority of Sunday and Monday, Callie really turned a corner. It’ll take some time for her to recover — we’ll still have aspiration issues to deal with — but it’s amazing to see once again all the life she has in her.

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.

Summer news

Next week Callie will start her last year at Child Enrichment Preschool. Summer has been enjoyable and fleeting for our family. We live near a YWCA where our older boys have been swimming almost every day. And Peter and Callie enjoyed their 3-day-a-week summer preschool sessions.

In early July, Callie had an appointment with Dr. Kravitz, her pulmonologist at Duke. Her lung tests looked good in that they’ve pretty much stayed the same with no decrease in capacity that we can tell.

Since Dr. Kravitz is Callie’s primary specialist, we also discussed our continued commitment to a palliative approach with Callie’s care. With SMA, there is no treatment, but there are many interventions that can be done. It’s easy for us to cling to the idea that these interventions can somehow save her. They can buy her time, but at what cost?

Callie’s spine is now curved forward and we know that eventually it will impact her lung function, if it hasn’t already. We could put rods in her back, but we’ve chosen not to. Even if we found a surgeon willing to operate on her, it would take Callie away from everything she loves: her school, her home and her family. She would be in tremendous pain. And to what end? What would be next? As horrible as it is, our little girl was not made to survive.

I have a friend who was watching her husband die from ALS. She said to me recently, “I’m trying not to make selfish decisions.” That’s how we feel as well. And truth is, the longer we prolong Callie’s life, the more we put her at risk for more complications and more pain.

There’s a different kind of pain associated with SMA that Callie is now experiencing: the pain of knowing she’s different. She talks a lot about walking. We’ve been honest with her and have told her that she will walk when she gets to heaven. But just a few days ago, she asked Nathan if he would teach her to walk.

This summer, with the help of our children’s social worker with Hospice, we took our older boys, ages 10 and 12, out for an evening and told them that Callie is likely to die from SMA. Back in February, two days after her birthday, we almost lost Callie. She’d already been sick, but suddenly her muscles were too exhausted to coordinate her breathing. Her oxygen levels dropped, her heart rate spiked and she turned gray. We had to force oxygen into her lungs and it took a total of 8 mg of morphine to relax her muscles enough to where she could coordinate her breaths on her own again.

Our oldest son was at a friend’s house that night. We realized he could’ve come home and his sister could have been gone. We don’t want our children to feel the responsibility of adult problems, but because of SMA they do have adult problems and we need to all be able to talk about it honestly.

Last week we went to the beach with my family and had a great time. Callie absolutely loved it! We took her bath seat and put it in the sand and let the waves wash up to her.

We also had an unexpected surprise: My little sister got engaged while we were there! The wedding is set for the spring, and Callie’s been asked to be the flower girl. She’s very excited about getting a pretty dress and the importance of her job. She could drive her wheelchair down the aisle, but I’ve been thinking that maybe her daddy should carry her down the aisle.

Snowy days

Three years ago we never could’ve imagined Callie being on a ski slope. But last week she was.

Callie has always wanted to make a snow angel, and she insisted on giving it a try. Click on the image for more photos.

Callie wanted to go some place snowy, so the Make-A-Wish Foundation sent us to Smugglers’ Notch ski resort in Vermont. No one in our family had ever set foot in skis so we were in for an adventure.

We packed our car — yes, we drove — and traveled two days and 1,000 miles to Vermont.

Smugglers’ Notch has an adaptive program for people with special needs along with specially trained instructors, so they were more than equipped to handle Callie. Callie used something called a Bi-Ski, which is like a little sled with skis on the bottom. After getting over her initial fear of having strangers customize the seat to meet her needs, she had a blast. She even got to go on the ski lift!

Smugglers’ Notch had all sorts of other fun things that Callie loved — a Ben&Jerry’s ice cream shop, shuttle buses, a heated pool and special Smugglers’ Notch mascots. Callie was particularly fond of Mogul Mouse.

The staff there was amazing! They gave us all ski or snowboard lessons and made sure we had the appropriate ski equipment and clothes. After our first day out in the snow it became clear why they said we really shouldn’t ski in jeans.

We’d like to especially thank Smugglers’ Notch public relations director Karen Boushie who coordinated our stay and went above and beyond to make Callie’s trip special. She arranged a sleigh ride at a nearby farm and took care of many little important details that tend to get overlooked.

We’d also like to thank Alisa Anderson, who manages the special needs program and was Callie’s instructor. Her last-minute flexibility and accommodations based on Callie’s specific needs at the time were invaluable.

Gene, one of our instructors, was Peter’s constant companion for three days. There’s no telling what Peter told Gene about our family. Fortunately Gene doesn’t seem like the blackmailing type.

And, of course, this trip would not have been possible without the staff and donors of the Make-A-Wish Foundation. We’re especially grateful for Liz Patton, Callie’s wish coordinator.

We had a wonderful three full days in Vermont and were sad to leave. But we packed up our car — again — and drove two days and 1,000 miles home.

It was truly a once-in-a-lifetime opportunity.

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.