One Step at a Time

BY JOANNA LONG WHITLER (better known as Bodhi and Luke’s mom)

Our second son, Luke, was born with the same weight, in the same hospital room and to the same parents as his big brother, and we expected the same typical development. We dreamed of our boys running around in our back yard, riding bikes down the path behind our neighborhood, and generally making merry mischief together. And for the first several months of his life, we still had that expectation. For nearly six months, Luke developed mostly “normally,” but by seven months, it was becoming clear that something was not quite right. He was not bearing any weight or pushing against any resistance with his legs and generally seemed weak. We had him evaluated by a pediatric physical therapist (PT) and then our pediatrician. By the time we saw our doctor, Luke’s decline had started to progress quickly, and he had stopped moving his legs at all. Our pediatrician listened to my recounting, did an exam, and referred us to neurology, where we were seen just two days later.

After an agonizing week of waiting for test results, we received our diagnosis: spinal muscular atrophy (SMA), a rare, genetic neuromuscular disorder that causes low muscle tone and muscle weakness. Four types of SMA exist on a continuum. In type 1, symptoms are typically present from birth or very early on and weakness progresses quickly, ultimately affecting breathing, and most individuals historically have not survived past the age of two. Type 2 typically presents after six months, and while many affected can sit with assistance, they cannot stand or walk. Luke was somewhere between Type 1 and Type 2.

Fortunately for Luke, a new gene therapy, Zolgensma, had been approved for children two and under in May of 2019, just four months before Luke was born. As agonizing as waiting for the test results to confirm SMA was, waiting for the test results to know if he was a candidate for this therapy was even worse. Zolgensma is the world’s most expensive single-dose medication, costing 2.1 million dollars. Worth every penny, this medication corrects for Luke’s missing gene copy, thus stopping the progression of SMA. A week and a half after the diagnosis, exactly three weeks to the day from seeing our pediatrician, Luke did, in fact, receive Zolgensma. During those three weeks, he had lost the ability to sit up on his own, his swallowing had became affected, his joints had started popping, and his legs had become totally still. Three weeks was pretty exemplary in today’s medical landscape, but it was three long weeks. Luke received Zolgensma through a tiny vein in his foot on June 3, 2020, my 35th birthday, but the greater gift came two days later, when I saw Luke’s legs move while he was on the changing table. His movement was coming back. In the subsequent months, we saw steady, slow improvement, as our life consisted of dozens of doctors’ appointments and blood draws and lots and lots of PT. Our home became filled with standers and gait trainers and a host of PT tools. To gain the benefits of water therapy, Luke began taking twice-weekly swim lessons at Salem Gymnastics, and he often swims as well at the Jerry Long YMCA. Luke is at home in the water, where movement is much easier.

Despite all these therapies and improvements, we were still hopeful for more. For Christmas last year, Bodhi, Luke’s three-year-old brother, asked Santa for a PJ masks toy and for Luke to crawl. A couple of weeks later, in late December of 2020, Luke was fortunate to begin a second therapy, Evrysdi, a daily oral medication which had just been approved in August of 2020. About one month after starting Evrysdi, we saw significant gains. Luke was starting to bear some weight in his legs; he could play for long periods on all fours or kneeling. His eating was improving. His stamina was increasing. Santa was a bit delayed, but in March, Luke began to crawl. He now crawls all around our house.

For now, we don’t know exactly what Luke’s future holds. Balancing hope and realism is an incredible challenge in raising a kid with a chronic medical condition or disability. But no matter what his physical abilities, whether one day we find him running around our back yard or biking down our path, he and his brother have already found ways to make merry mischief and bring joy to every day.

We would like to share a special thank you to Dr. Elizabeth Mark of Propel Physical Therapy, Dr. Soren Johnson, and all the folks of Novant Health Robinhood Pediatrics and Dr. Michael Cartwright of Wake Forest Baptist Health for their excellent care. For more information about SMA, newborn screening or other stories about SMA, I encourage people to visit Cure SMA.

Dolly Parton’s Imagination Library:

Spreading the Love for Reading One Book at a Time

BY MEGAN TAYLOR

All children, young, older, and adults, relish the feeling of getting a new book and opening the crisp pages before diving in. You may not be an avid reader, but you can’t deny the emotions that come with getting something new. And that is the exact feeling children get when their book from Dolly Parton’s Imagination Library comes in the mail each month.

The History

On a mission to provide free, highquality books to children from birth until age five, Dolly Parton’s Imagination Library has been distributing novels since 1995. For the first five years, the Library only gave out books to those living in Sevier County, Tennessee, which is where Parton grew up. In 2000, efforts were made to expand the Library throughout the country. Within three years, one million novels had been sent to families. More growth was still in store for the organization, and a program was launched in Canada in 2006. A year later, in 2007, additions continued to be made, with one in the United Kingdom, in Australia in 2013, and Ireland in 2019, all with the same purpose of donating books to children.

In addition, Dolly Parton’s Imagination Library has been the recipient of multiple awards and achievements, including the Good Housekeeping Seal of Approval, Best Practices award from the Library of Congress Literacy Awards and achievements in Reading Psychology.

The Books

Dolly Parton’s Imagination Library focuses on giving age-appropriate, high-quality novels that help promote literacy skills and children’s success. All are centered on the themes of inspiration and imagination with regard to “diversity of people, their roles, culture, and environment: promotion of self-esteem and confidence, appreciation of art and aesthetics,” as stated on the Library’s website. The Blue Ribbon Book Selection Committee, which includes early childhood literacy experts, meets every year to review possible selections, all published by Penguin Random House. The Committee chooses novels that meet children’s different needs and developmental levels. Then, the titles are donated by local communities and are sent to children within those areas. Audio and braille books are also available. Each book comes personalized with the child’s name and is delivered directly to their home.

How Do I Register My Child?

The beauty of the Imagination Library is that all children within the age group can take part, regardless of their family’s income. However, you need to make sure there is an affiliate in your area. The good news is, there is one in ours! Go to imaginationlibrary.com/ check-availability/ to register your child either by mail, online, or by visiting Smart Start of Forsyth County, Inc. at 7820 N. Point Blvd, Ste. 200 in Winston-Salem. From there, you’ll complete the eligibility form and begin to receive books!

Want to Start a Program in your Area?

Unfortunately, not all areas in the United States have a program through the Imagination Library. The first step is to visit the organization’s website at imaginationlibrary.com/usa/start-aprogram/. You’ll be asked to fill in your information and purpose for starting an affiliate. This will be sent to a Regional Director, who will help you get started. The more programs, the more children able to receive books!

The mission of Dolly Parton’s Imagination Library continues to grow and inspire others. It has opened the door for many children’s imaginations. In fact, the as Library’s website states, “recent studies suggest participation in the Imagination Library is positively and significantly associated with higher measures of early language and math development.” Yet, there is one positive that goes beyond the years: the Imagination Library’s help in developing a love for reading for millions of people.

Botulism and Canning Safety BY LISA S. T. DOSS

Botulism is a severe but rare chemical poison that attacks the body’s nerves one or two days after consuming a contaminated food. The earliest symptoms appear in the eyes and face, resulting in blurred vision, drooping eyelids, and vomiting. A severe toxicity will impact the muscles, controlling respiratory systems, and may lead to unconsciousness. How does this happen? A spore, existing as dirt and dust, moves into a low-oxygen environment, such as an enclosed jar or can, and transitions into a dangerous toxin. The best way to prevent home-canned foods from contamination is to understand pH levels and practice habits of safety.

Why is pH Important? The pH factor refers to the levels of hydrogen ion activity in a solution. The measurement range extends from 0, the most “acidic,” to 14, the least, termed “alkaline.”

• Low-acid foods require a pressure cooker and to be heated to 250 degrees

Fahrenheit to kill bacteria. Researching proven and tested recipes will help ease you into this type of canning experience.

• Acidic foods with a pH level of 4.6 and below require a boiling water bath process to preserve foods effectively.

Most people believe acidity and pH levels are equal, which is not true! Some acidic foods, such as tomatoes and figs, have a level greater than 4.6. The solution is to add citric acid or lemon juice.

Canning Tomatoes Prepare a pot of hot water while marking an “x” with a knife on the top of each tomato. Allow a handful of tomatoes to blanch for five seconds. The peels remove easily. Put in a clean, glass Mason jar, add two tablespoons of lemon juice, a teaspoon of salt, and wipe the rim before adding new seals and rings. Place the jars in water, fully covered by the water, for 45 minutes. Canning Cucumbers Use “pickling” cucumbers, which are smaller in size, providing small slices. Whether you choose dill, sweet and sour, or bread and butter, having a homemade jar of pickles makes a great gift or a quick addition to any food-based gathering! Start collecting seasonings, such as dill, red pepper flakes, garlic cloves, mustard seed, celery seed, and coriander, early. Canners will discover barren shelves if important ingredients, especially vinegar and pickling salt, are not purchased in advance!

A few points to keep in mind: • As gardeners become overwhelmed by harvesting cucumbers daily, don’t leave your cucumbers soaking in refrigerated saltwater for too long. Take the time to process!

• Pack the jars, leaving one inch of air space at the top.

• Always wipe the rim clean and cover with a lid and rings.

• Cucumbers take five minutes in a water bath. Remember, the longer you boil, the softer the pickles become.

• After removing jars, listen for the audible popping sound on your jars. If you can press down on the lid, it’s not sealed!

Canning Beans Calculations are necessary when canning. Roughly nine pounds of beans fills nine pints, and 14 pounds accommodates seven quarts.

Important tips: • Begin by soaking the beans in cold water; then, trim the ends and pack tightly in a hot, sterilized glass jar, leaving an inch of air space.

• Stir and press lightly to release the bubbles.

• Add canning salt, a half-teaspoon

for pints, one teaspoon for quarts to enhance flavoring. • Wipe rims before sealing!

Pints of beans require 20 minutes in a pressure-canner, while quarts need 25 minutes.

TIP: Follow all canning tips when processing asparagus, green beans, peppers, beets, and corn. Each vegetable is a prime incubator for botulism. Check temperatures! If unsealed, one option is to refrigerate and eat the canned vegetable within a week. Should the canned jar go undetected beyond 24 hours, discard it immediately!

Canning Corn Approximately 30-pounds of corn fills seven quarts.

Begin with blanching the cob for two minutes, then transfer to a bath of ice water. Cut the corn away from the cob and pack in hot, sterilized jars. Add a half-teaspoon of salt to each pint, or one teaspoon per quart. Fill with boiling water with one inch of air space. Stir! Wipe the rim before sealing! In a pressure canner, allow 1 hour and 25 minutes for quarts and 55 minutes for pints.

TIP: Consider adding jalapenos or other spices to a few jars, or squash, garlic cloves, or green peppers!

Using Pickling Salt Often labeled as “canning” or “pickling salt,” it is fine-grained and iodine-free. Without the additives, it’s simply a raw mineral used to prevent canned vegetables from turning colors. Cloudy brine is an additional way to detect spoilage!

This summer, can with confidence!

Appreciation Month

BY DENISE HEIDEL

There is nothing traditional about books these days. After all, we’re all well-acquainted with the world of electronic books and audiobooks. Many of us have Kindle, Nook, other audiobook accounts, frequently carrying a virtual library wherever we go. But this month, we’re focused on audiobooks, because June is Audiobook Appreciation Month.

Originally known as “talking books,” audiobooks have become a staple in our culture. We listen to them while we drive, while we walk, while we work, while we clean the house—we listen virtually any- and everywhere.

It may surprise you to know that audiobooks aren’t exactly a modern technology. The concept came into being in 1932 when The American Foundation for the Blind produced the first audiobook recording on vinyl record. Each side of the record could hold 15 minutes of reading, so you can imagine how frustrating that would be, especially depending on the duration of the book…. After all, let’s consider the world’s longest book, In Search of Lost Time, by Marcel Proust (also known as Remembrance of Things Past). An unabridged edition of this title, published in seven volumes between 1913 – 1927, would require 153 hours of listening time…. Or, in 1932, 18,260 two-sided vinyl records.

Another fun fact about audiobooks—they are more expensive to produce than e-books or print books. Pricing depends on the narrator.

Narrators can make between $100 to $500 or more an hour, which means a standard ten-hour audiobook narrated by a known voice may cost $5000 or more to produce. Plus, one must factor in the additional production costs. Therefore, to give some comparison,

J.K. Rowling’s Harry Potter and the Sorcerer’s Stone would cost a reader $9.99 as a Kindle e-book; $8.49 as a paperback; or $29.99 as an audiobook.

Speaking of Harry Potter—the seven-book series was narrated by none other than Jim Dale, a legendary

Broadway actor and comedian. Throughout the series,

Mr. Dale created over 200 unique character voices and read for a total of 117 hours and four minutes (that’s like talking for almost five straight days). At one time, Mr. Dale held the Guinness World Record for the number of voices created for audiobooks (Roy Dotrice later usurped him with 224 distinctive voices in his narration of A Game of Thrones).

Audiobooks are great for learning, too. Parents who want their children to love reading may want to expose them to audiobooks. Research says that audiobooks can improve reading comprehension by 76%, and when students combine reading and audio, their recall is 40% greater than print alone. Audiobooks can help expand a child’s vocabulary and improve his or her fluency. For those who are concerned that audiobooks may negatively impact a child’s ability to sight-read, studies have shown that is not the case, especially when the audiobook is read in tandem with the print book. In fact, children become better readers that way.

So, find your next audiobook and get to listening! Most people are familiar with Audible through Amazon, and while it’s a great program, check out Scribd! Scribd offers unlimited downloads each month of both e-books and audiobooks.