Nook will store several 9th grade textbooks at Gulfport High School this fall 2011.

Have you lifted your kid’s backpack lately? Ugh!  When I first got my Nook, I commented to friends that I hoped schools went to eReaders one day.  My son, Nathan, had back surgery to correct Congenital Kyphosis a few years ago.  He’s doing well, but I’ve worried about the toll heavy books might take on him in years to come.

Well–guess what! Backpacks will get lighter at Gulfport High School this fall according to a report from WLOX.  The school district has purchased 570 Nooks for the upcoming 9th grade class.

I purchased my Nook last year, and I love it. There are so many advantages to eReaders:

• Save gas–no need to drive to the bookstore.
• Order a book at home; arrives in seconds.
• Carry your library of hundreds of books anywhere.
• Save space–no need for bookshelves.
• Change font size to make reading easy on the eyes.
• Save money–ebooks are cheaper than hardcover and/or paperback books.

It made sense to me that schools of the future might place textbooks on eReaders–but, wow! I didn’t imagine our local high school (Gulfport, Mississippi) would embrace the new technology this fast.

I hope this proves to be a successful experiment so that other grades (and other schools) will enjoy the convenience of Nook books.

Nathan watches a Disney video during EKG testing at Children's Hospital in New Orleans.

Annual checkups are an important part of maintaining Nathan’s heart and back health.  Recently, Bryan, daughter Michelle, and I traveled with Nathan to Children’s Hospital in New Orleans to see how his heart looks four years after surgery to correct Partial Anomalous Pulmonary Venous Return (PAPVR), a problem associated with his scimitar syndrome.

The echocardiogram seems to be a challenge for the technician each year.  His heart is positioned strangely in his chest (dextrocardia), so it takes a little patience to capture the desired images.  It doesn’t help that Nathan is extremely ticklish, especially when the transducer is placed at his neck.

During Nathan’s heart surgery, a baffle (tunnel) was created to redirect oxygenated blood from the right atrium to the correct chamber, the left atrium.  The last time the technician was able to capture an image showing the baffle was a few days after his surgery in 2006.  So it was a pleasant surprise when the cardiologist spotted it and reported that it appears to be unobstructed and working fine!

Nathan poses by a whimsical seahorse painting while he waits for one of his doctors.

In addition to his congenital heart defect, Nathan was born with a hemi-vertebra which was diagnosed as congenital kyphosis three months after his heart surgery.  We visited Nathan’s pediatric orthopedic surgeon on the same day.   I wish I had snapped a photo of the radiographs Dr. King presented to us.  One showed his spinal column right after spinal fusion surgery; a piece of cadaver bone replaced the hemi-vertebra and was easily discerned from his natural vertebrae.  The latest x-ray showed the cadaver-bone vertebra and the two vertebrae directly above and below had transformed into one solid piece, just as it was supposed to do.  There was concern, however, that the fusion was curving about 40 degrees.  If it continues to curve, reaching 50 degrees or more, it may be necessary to place rods in his back.

I hope, I hope, I hope… it will hold.

We pushed that thought out of our minds and went to Copeland’s after our day at Children’s.  We had their fabulous Spinach and Artichoke dip with fried bow-tie noodles for an appetizer (Nathan only eats the noodles).  Bryan had barbeque with cornbread.  Michelle and I had a delicious pecan encrusted fish.  Nathan had his usual–chicken tenders with fries.  Dessert:  Cheesecake Napoleon with praline sauce for us big kids, Big Al’s Chocolate Fudge Cake for Nathan.

Sometimes, you have to look at life’s challenges with the mindset of that famous philosopher, Scarlett O’Hara:  “I’ll think about that tomorrow.”

This little news segment ran on our local station, WLOX, back in 2007.  Nathan was five years old and was just a few months recovered from heart surgery to correct PAPVR (Partial Anomalous Pulmonary Venous Return), a component of scimitar syndrome.  His sister, Michelle, presented him as her everyday hero at a school luncheon.  Nathan whispered to Bryan and me, “Are you so proud?“  Indeed, we were.  Of both the presenter and the receiver!

It was a bittersweet moment.  We had just learned he had congenital kyphosis and would require spinal fusion surgery to prevent paralysis.  That surgery was successfully performed a few months later.  But on that day, he was our inspiration–our hero!

The Sea Climb at Lynn Meadows Discovery Center; Gulfport, Mississippi

“This is great, Mom,” Nathan said as I pulled in at Lynn Meadows Discovery Center. “It reminds me of my childhood.”  Nathan is only eight-years old, but seems to believe he is no longer in his childhood.  In a way, I understand his perspective.  After all, he was a regular at “Meadows” (Nathan-speak for LMDC) when he was three and four-years-old.  That’s half his life ago.

Due to reasons beyond our control, our trips to LMDC stopped abruptly. First, Hurricane Katrina swept an 11-foot storm surge through the first floor, destroying the exhibits, and causing catastrophic damage to the supporting structures:  the education building, the gymnasium, and the extensive tree houses built among the live oaks.

Nathan in the Sea Climb; Lynn Meadows Discovery Center; Gulfport, Mississippi

Then, as the community and corporate sponsors pulled together to rebuild LMDC, Nathan’s life became dominated by surgeries. The first surgery occurred in Michigan’s C.S. Mott Children’s Hospital to repair his congenital heart defect (he has Scimitar Syndrome with PAPVR).  After heart surgery, we learned he had Congenital Kyphosis and needed spinal fusion surgery to prevent paralysis.  He was in a body cast for several months afterwards. So we stopped going for a while, and  Nathan seemed to have forgotten his old stomping grounds until I drove into the parking lot two weeks ago.

He quickly recollected his “childhood” and began reenacting scenes from that era.  He scrambled up the Sea Climb, pausing briefly for me to take a couple photographs.  He hopped out at the History Hotel on the second floor  and sat down for “tea” and a plate full of “pastries.”

Nathan rings up groceries at Lynn Meadows Discovery Center; Gulfport, Mississippi

He visited Mexico at Celebrate the World We Share and shopped for groceries at To Market, To Market (chocolate milk, a baguette, an orange, Orville Redenbacher Popcorn, and a crab).  Then he executed a flawless cooking show as if he were Emeril Lagasse in the LMDC Television Studio.  He also performed about a half dozen experiments in A Matter of Science (and he thought he was just playing).

After a kayak ride down the bayou, Nathan made his way down Sea Climb to check out the first floor exhibits.  He hopped a train at the Dolan Avenue Depot, and spent some time at the spacious train table.  After riding the rails, he took to the seas at The Port, manning the helm and ringing the bell on a shrimp boat.  Feeling a little creative, he stepped down the hall to the art room where volunteers showed him how to do “scratch art.”

Bubblemania at LMDC

When Nathan’s masterpiece was completed, we decided to take a shortcut through Bear Camp Bayou (for children under four) to check out Bubblemania, an outdoor summer exhibit.  By pulling a long cord, he made a huge bubble sheet at one station.  Then he tried out a machine that formed hundreds of tiny bubbles between two glass panes.  Mostly, he liked making large bubbles with the assorted bubble wands.  No one was looking, so I made a few myself (if the Executive Director, Cynthia Minton, can do it, so can I ).

It’s amazing how fast two hours goes by at LMDC.  I told Nathan it was time to go home, but he managed to talk me into ten more minutes.  He needed to make a run through The Tree House Village for old time’s sake.  I hated to interfere with his quest to reconnect with his childhood.

Nathan waves from the Tree House Village at LMDC.

[The Lynn Meadows Discovery Center is open Monday - Saturday, 10:00am to 5:00pm, during the summer (Tuesday - Saturday beginning August).  Tickets are $7 for adults and children over age one.  Family memberships are also available.  For more information, contact LMDC at (228) 897- 6039 or check out their website at www.lmdc.org.]

Upcoming Events at LMDC:

•The WINGS Performing Arts Center of LMDC presents “The Wiz” at MGCCC, Jeff Davis Campus, Fine Arts Auditorium, July 17-19.  Click here for tickets and details.

•A Circle of Friends presents “Performing Friends” on Saturday, July 25, 2009, 10am to 4pm.  This free event will be held in the WINGS Performing Arts Foyer at LMDC.  This is a family fun day which focuses on disability awareness.

DisabilityConnection.org, an Internet Resource Center for people with disabilities, has partnered with LMDC to bring this event.  Expect a great day of performances, demonstrations, door prizes, games, food, and booths.

"I think I'm starting to look like Sparky..."

The Sunday before Nathan’s back surgery (to correct Congenital Kyphosis), I knew his last fun event would be the Awana Club meeting held that night at our church, Grace Memorial.  By the week’s end, he would be recovering in a body cast, a fact that had Bryan, me, and other family members sad and worried.  The year before, we had made it through surgery to correct a congenital heart defect known as Partial Anomalous Pulmonary Venous Return, a complication of Scimitar Syndrome.  We felt like:  “Oh, no, here we go again.”

The previous Sunday, Nathan had won the coveted “Sparky Award,” meaning he had earned the honor of spending the week with the stuffed firefly toy that served as the club mascot.  He would be returning Sparky and leaving the next morning for Children’s Hospital in New Orleans.  Before the meeting, Nathan and I sat down at my computer and concocted a letter to let his friends know he would not be coming to meetings for a while.  I don’t know if I’m right about this or not, but I have always suspected that God is particularly moved by the prayers of children.  In a way, this was probably my sneaky way of soliciting sweet petitions from His favorite little folks…

As we created the letter, I remembered a picture I had taken of one of Nathan’s amusing antics.  He had the wild idea to cover his face with Sparky stickers one day and, after recovering from the initial shock of his unexpected appearance, I snapped the above photo.  So we left this letter and the funny (maybe a little creepy?) picture with Awana Director Jamie Carver before we left the club meeting that night.

Nathan mugging with Awana leader, Larry Burns

To be truthful, my own ability to pray had become “crippled” so to speak, so I am grateful that the children and my church family picked up my slack.  The letter was shared with club members and the kids sent Nathan adorable handmade cards as he recovered.  I am told that they did, indeed, pray for him.

What a thrill it was to return to Awanas the following month!  He was not able to participate in the signature Awana running games, but our youth minister, Evan Dickson, cleverly had Nathan “calling the shots” during the games, allowing him to feel “in charge.”

As the months went by, he soon transitioned into a custom-made body brace, and little by little, regained his ability to run and play.  The body brace is gone… now it’s all just a terrible, and in some ways, wonderful, memory.

Related post:  The Principle of Finders Keepers

Happy Day! Nathan is about to have his body cast removed at Children's Hospital in New Orleans

When Nathan was born, we soon discovered that he had Scimitar Syndrome and would need open heart surgery to correct Partial Anomalous Pulmonary Venous Return. It was a frightening time in our lives.  Bryan and I were tremendously relieved when surgery in Michigan proved to be successful.  End of story?  I wish.

About three months later, a checkup revealed that a congenital heart defect was not his only problem. Nathan had a back defect that would paralyze him if left untreated.

After spinal fusion surgery to correct congenital kyphosis, Nathan spent several months in a body cast that started just under the armpits and ended about mid-hip. In the summer of 2007, I searched around the internet to see if a parent had posted their experiences with helping a child under these circumstances, but there was not much to be found on the subject.  Perhaps, writing about our experience will be helpful to another family.

One of the first tricks we learned was how to “petal a cast.” The edges of a fiberglass cast can be rough and uncomfortable, so we were given a roll of “Hy-tape,” a peach-colored adhesive tape, to line the exposed edges of the cast.  This tape is latex-free and has a zinc oxide formula that is supposed to be “soothing to delicate skin.”  Using short three to four inch strips, we worked our way around the top edges, the bottom edges, and the circular cut-out area that allowed his diaphram/abdominal area breathing room.

During his first body cast check-up, it was noted that the cast was slightly high under one of his armpits, so we were sent to the cast technicians to cut away a small section. After the adjustment, the technician gave us a different adhesive tape to re-peddle the cast under his armpits.  Nathan liked this tape much better.  Instead of a rubbery feel, this soft brown tape had a suede-like texture that was more comfortable against the skin.  The name of this tape escapes me (anyone out there know?)*, but if given Hy-tape, you might want to inquire about the tape I’ve described.

Although I heard Nathan’s cast referred to as a “spica cast” by a young resident at the hospital, I believe a true spica cast immobilizes the hips and thighs.  At a certain point in Nathan’s recovery, he was able to walk as his cast stopped short of his legs.  It is still important to escort a small child when using steps, chairs, and bathroom facilities, because the rigid cast can cause problems with balance.

Fiberglass casting material is waterproof, but the lining is a combination of cotton batting and cotton gauze.  You do not want this to get wet!

Bath time needs to be well-planned.  This is what worked well for us:

It's important to prepare for bath time when your child is in a body cast.

1. Lay a large waterproof pad on a bed.  Top it with a bath or beach towel.
2. To the side of this, have your bath supplies ready–washcloth(s), a towel for the body, a hand towel for hair, liquid bath soap, a plastic basin for warm soapy water, a second basin for clear water, “No Rinse” Shampoo.
3. Place child on the towel and clean one quadrant at a time (wash cloth with soapy water, then clear water), using care not to get the inside of the cast wet.  Dry thoroughly between quadrants to keep child from getting cold.  In cooler temperatures, you may want to place the towel in the dryer a couple minutes for added warmth.
4. Keep child warm with a towel or blanket while washing hair.  With “No Rinse” Shampoo (drug store should carry this), you can lather up the child’s hair, and then use a hand towel to fluff hair until dry–no water necessary.  I like this better than trying to shampoo and dangle a child’s head under water to rinse.

Another challenge we faced was the “itchies.” We found that we were able to use chopsticks to carefully reach a few miserable places  inside the body cast.  Depending on your child’s age, it is probably a good idea to supervise playing with small toys such as legos.  Small items could get lodged in the cast and cause skin irritation.

This is no picnic, but… if you can keep your child entertained with books, movies, toys, games, and upbeat conversations, this, too, shall pass!

Related posts:  The Principle of Finders Keepers, Before the Back Surgery.

Also see my article in Parents magazine:  “Nathan’s Wonder Slide”

*April 29,2009 Update:  “Moleskin tape.”

Nathan with mail from Ms. Jan Spiers

While Nathan was recovering from his last surgery (for congenital kyphosis), he was delighted to receive letters each week from Jan Spiers of Picayune, Mississippi.  Her letters were always filled with words of encouragement and interesting anecdotes.  And there was always a surprise of some sort enclosed:  pirate stickers, a refrigerator magnet, funny cartoon clippings… Sometimes she even sent a package with paperback books and little toys.

The remarkable thing to me was that Ms. Jan Spiers had never laid eyes on Nathan in her life.  She learned about him at First Baptist Church of Picayune where my Aunt JoAnn and Uncle Jerry were requesting prayer for him.  Other children, I learned, have received similar attention.  It just goes to show you–missionary opportunities can be as far away as Timbuktu or as close as your own backyard.  Thanks, Jan!  And thank you FBCP for keeping Nathan in your prayers during those rough times!

- Karen