Stand, Stand, Stand By Me

 Recently, we traveled to St. Louis for Kyra’s two-year spinal fusion surgery check up.  On Wednesday morning, we left Kyra’s puppy, 11-week-old Kida, with some friends (hoping their dogs would teacher Kida some manners); we left our 8-year-old yellow lab Anya in charge of the house and the indoor cats; we left the barn cats, horses, chickens, and ducks in the hands of co-workers, friends, and the construction crew doing some work on our house; and we drove the 7 or so hours to St. Louis.

Kyra’s appointment was on Thursday at 8:00 am, at St. Louis Children’s Hospital.  Her surgeon showed us the x-rays that were taken earlier that morning.  The fusion was healing well, all hardware was intact, and Kyra’s scoliosis result is about 3% off center.  Compared with her pre-surgical curve and rotation, pretty much a miracle.  Dr. Luhmann didn’t quite release Kyra from care, though.  He said he’s happy with the way the bones of her spine are fusing, but the strength of those bones could be better. The purpose of spinal fusion, he explained to us (probably for the 100^th time, but he was patient anyway) was that new, fused bone growth would take the place of the surgical hardware (the rods and pins in Kyra’s back), so that Kyra’s spine would hold her upright independently of the implants. At that point, the implants remain in her body simply because the surgery that would be required to remove them would be more risky than leaving them in place.

When we discussed why Kyra seems to be in some pain now, he said that many children with severe neuromuscular-skeletal disorders don’t exhibit pain in their back, hips, knees, etc. until adolescence or early adulthood, when our bones naturally begin to harden and joints begin to contract.  He explained that as humans age, the need to strengthen our bones with weight bearing exercises increases also.  He said that the spinal fusion will have relieved any pain in her back, but pain in Kyra’s hips or knees may be showing up now.  So, we’re returning in a year for another check up. In the meantime, he referred us to 3 trusted hip specialists for further evaluation, and Kyra is supposed to stand, stand, stand as much as she can.  (Yes, Dr. Jan, another advertisement for standing!)

After Kyra’s appointment, at approximately 8:45am, we went to the lobby of the hospital’s main entrance to decide how to spend the rest of the day.  Soon after sitting down and explaining to multiple security guards why we were there, a man standing near us nodded toward Kyra and said, “She’s got Cerebral Palsy, has she?”

The Mennonite man that approached us lifted the cuff of his crisp peacock blue shirtsleeve to reveal a silver-gray wristband, similar to the Joyful in Hope bands we had made for Kyra, and that Trac wears constantly.  After talking with the man for a few minutes, we learned that his daughter had been born with Cerebral Palsy, with symptoms very similar to Kyra’s, but had passed away in 2006 at the age of 13. “Sometimes, it’s just too hard to be here,” he remarked.  By then, I had noticed his laminated PICU badge.  At St Louis Children’s Hospital, this badge is required for admittance to the PICU (Pediatric Intensive Care Unit) ward.  When you will be there for a short time, as we were two years ago, you are issued a stick-on paper badge each day. This man had the dreaded laminated badge.  He was there for the long haul. The man told us his 11-year-old son had been in a very bad accident involving a horse-drawn farming implement.  The doctors at St. Louis Children’s, after 14 hours of surgery so far, had been able reattach the boy’s leg, but the man was unsure whether his son would walk again, or even wake from his coma.

When the man left to check on his son, we decided to go to the free St. Louis Zoo, along with a few hundred children from several area summer day camps.  Our timing was perfect. We arrived just ahead of the busloads of energetic youngsters.  We found a free handicapped parking spot just down the road from the zoo. We started our tour right after feeding time, so the animals were more active than we usually see.  We entered the butterfly enclosure after a day camp group had exited, but before the insects had calmed down. Our visit coincided with the internships of several undergraduate animal science students exited to share their insights. And we were ready to leave just before the thunderstorm hit.

What we learned on this trip:

• Stand! Stand! Stand! Your bones will love you for it.
• Being the parent of a disabled child hurts every day, for the rest of your life, despite your culture, demographic, socio-economic standing, religion, or other boundary-related nonsense.
• Zoos are most fun when the animals are awake.
• If you want to be in St. Louis when it rains, ask us when we will be there.

Hopefully, that’s all Joyful in Hope will have to offer for awhile. Stand, and be present now.

Peace to all.

Sara & Kyra

No Trouble with the Curve

Kyra's body brace is off!  After four months of wearing her body brace, and being reclined at no more than a 30 degree angle, Kyra is now able to sit up and see the world without the curve of severe scoliosis holding her down.

June 21, 2013: Last "curvy" photo, with Curtis & Christa

The day her brace came off (Saturday, October 19), we were all a bit apprehensive.  The first transition to her wheelchair went fine... but was painful.  Kyra's hips and hamstrings, being immobile for four months, are very, very tight. Just lifting off her bed was difficult for her to bear.  We could see the pain in her eyes and the movement of her hands, but her face was determined, so we continued. And we were rewarded with Kyra's trademark smile as soon as she was secured in her seat.

October 19, 2013: No more trouble with the curve!

All day, we watched her heart rate, her eyes, and her breathing for signs of distress, and responded quickly when she had had enough sitting and needed to lie down, rest, and watch "Dark Shadows", surrounded by family, friends, flowers, and balloons.

Little by little, Kyra is able to sit upright for longer periods of time. Her legs are still very stiff, and need lots of stretching and physical therapy before she can sit comfortably.

But, she can sit in her wheelchair, her easy chair, and the car without falling over; she can move both of her arms freely; she does not have to depend on someone holding her up just to participate in the normal activities of life. In short, she no longer has trouble with the curve.

Peace.

Cat Naps

First day of school - post surgery.

We're three months down... one month to go until Kyra's body brace can come off for good! On that anxiously anticipated day, the celebrating at our house may be bigger than Kyra's upcoming high school graduation... maybe even bigger than the shin-dig being planned for Christa and Curtis in July.

It's funny how the time since Kyra's surgery seems like one very long day, and forever, and the blink of an eye... all at the same time.  Sometimes I look up from the post-surgical-care-stupor, expecting it to be mid-June, and see the school year in full swing, crops readying themselves for harvest, and Christmas breathing down my neck. A flashback to Rip Van Winkle.  Or an extended series of cat naps.

While Kyra's still restricted to being reclined at no more than 30 degrees, she refuses to stop trying, and never stops smiling.  Maybe that's because she's already doing some pretty awesome things:

• She's going to school two hours a day. She still has an incision wound and threatening pressure sores that require her to be in bed pretty much the rest of the day.
• She's practicing with her Special Olympics bowling team once a week.  Both of her shoulders and both of her arms are already steadier and stronger than they were before her surgery. This week, she bowled 116 and 76 (no bumpers allowed in Special Olympics)!  Maybe she's right-handed after all.
• She's using the GoTalkNow communication app on her iPad more independently. She's initiating conversations, answering questions, and combining concepts that even non-experienced helpers can understand.

She's also helping her sister pick out her wedding dress, assisting me with our new preschool Sunday School class, training new respite staff, doing evening chores with Dad... and sleeping.

This last accomplishment is one of the biggest. Kyra rarely sleeps for more than 90 minutes at a time.  I can count on one hand the number of times she has slept through the night since she's been born (these dates have gold stars on my calendar). But as she heals, she sleeps more comfortably, more soundly, and more deeply. Two or three or four hours at a stretch.  I often wake up in a panic after an hour or so, and have to check that she's still breathing.

Whit and Crosby. Professional Cat Nappers.

If this trend continues, Kyra and I will have to figure out what to do with this new source of renewable energy.  I'm sure there are plenty of worthy causes just waiting to help us use up our waking hours.

I'll miss the cat naps, though.

Peace.

Curing the Seven-Week Itch

Kyra’s spinal fusion surgery was almost 7 weeks ago, and we are both suffering from a severe case of 7-week itch.  Except for a quick visit to church, the trip to St. Louis for her post-surgical checkup, and attending her cousin’s wedding ceremony, Kyra has not left the house.  Her full-body brace, and the doctor’s orders that she be reclined at a 30 degree angle or less, makes it difficult to move her about, and the pressure sores and lingering incision wound have kept her in bed for days at a time.  In addition, our van could not accommodate her reclined wheelchair, so it took at least two experienced adults to transfer her from her wheelchair to the van, and back again.  In other words, Kyra and I couldn't go anywhere without help.

Yet, when the dog jumped into the open van door, and waited… and waited… and waited nearly 5 hours… for a ride, I knew it was time to dust off my “make do” skills, and get us all out of the house and back into life.

So, two friends, three days and lots of trials (and even more errors) later we were ready for a test drive.  With the back and middle seats removed from our Grand Caravan, we rolled Kyra into the back of the van on our re-vamped ramps, secured her wheelchair with two seatbelts and a chain, and took off for our first excursion: A private tour of the new Gilbert High School building.

An hour and a half later, Kyra was exhausted from the van ride, the school tour (complete with an elevator ride to the second floor and a sneak peek of the auditorium), and hearty greetings from faculty and staff.  As her face faded from an ear-to-ear grin to a slight smile, we knew it was time to go home.

All in all, we’ve had a successful first day back in the world.  We still have to pack and dress Kyra’s incision wound and watch carefully for re-infection, keep her reclined at no more than a 30-degree angle, roll her from side to back to side regularly to prevent further pressure sores, and administer medicines around the clock.  But somehow it doesn’t seem quite so daunting:  Kyra’s almost at the halfway mark to throwing away the body brace and sitting upright again.  I’m thinking that might be just cause for an autumn bon fire.

Peace.

Jiggity Jog

We're home!  Actually, we've been home since Saturday, adjusting to the new routines and requirements of Kyra's recovery.

We were so blessed to have Kyra's sister, Christa, and her fiancé, Curtis, at the hospital with us every day; yet, after 9 days of being harassed at all hours of the day and night by doctors, nurses, therapists, and every other kind of medical professional, it was time to go home and rest.

We are grateful to everyone that helped keep our home safe and intact while we were in St. Louis, and kept Kyra in their thoughts and prayers. We especially thank Alice, who babysat the dog, cats, kittens, horses and chickens; Lon who kept the lawn from becoming a jungle;  Grandma Joan, who tried to maintain order in the veggie garden; my employer and co-workers, who graciously gave me the time I need to focus on helping  Kyra get better; and the Chatham Anglers baseball team, who have been promoting Kyra's journey all season (see www.ChathamAnglers.com). 

We are also grateful for the help we have received since we've been back, from Mary and Grandma Joan running my errands, to a visit and prayers with Pastor Cathy, to Erin and Paul offering their electronic and construction skills as we equipped Kyra's bedroom with an entertainment center, and built ramps to accommodate her new wheelchair.

In addition, Pam and Kate have been helping me get Kyra in and out of her chair throughout the day, and Pam's nursing expertise is keeping a close eye on Kyra's remaining trouble spots, and keeping my anxiety at bay.

Kyra is still loopy from the pharmacy of pain medication she takes daily, and tires very, very easily.  But signs of the true Kyra are breaking through those drug-dilated eyes.  She INSISTS on having her High Point University baseball cap, red spatula, "Fiddler on the Roof" program, and Chatham Anglers team photo with her at all times.  I have hidden all of her shoes... Her feet are still too swollen to wear them, and her lap doesn't have room for any more treasures.  She smiles at Anya, her dog, who is never more than a few feet away, and rolls her eyes at me when I spill medicine on her bed.  Slowly and steadily, she will indeed win this race.

Peace.

Maybe Tomorrow

Since Wednesday, we've been hearing, "Maybe tomorrow you'll go home."  Today it seems to be true.  Kyra's been completely off oxygen all day, and is tolerating her pain meds well without being too loopy.  If she can stay off oxygen all night, too, we'll be good to go.  Then maybe we can get some rest! Hospitals are no place to sit around and relax.  Here's just part of Kyra's day today:

• A visit from Cinderella, Prince Charming, and Gus the mouse, who gave her a princess wand and pink bracelet.
• A stroll around the hallway of her hospital ward, making friends and checking out the artwork on display.
• An excursion to the hospital's rooftop garden, during which we watched transport helicopters land on the roof near us, and wondered what the blaring sirens and strobe lights meant (it turned out to be a false fire alarm).
• A Dairy Queen treat with Christa and Curtis to celebrate Christa's birthday.

Oh, and Kyra also had six sessions of respiratory therapy, as well as several visits from nurses, doctors, and Child Life staff, and a few cards to open and read.

Whew! We can't wait to get home and get some sleep!

Peace.

Fuzzy and Furry Day

Today was a fuzzy and furry day. Kyra had lots going on, including x-rays, physical therapy, respiratory therapy, and changes in medicines, as well as visits from the orthopedic team, the pain team, nurses, techs, and Dr. Brunstrom (her doctor from the Cerebral Palsy Center).  She's still pretty fuzzy-headed all day long, preferring to nap these memories away.

She's going to be a bit miffed with herself, though, when she realizes she missed the furry part of the day, a visit from Pepper, the touch therapy dog.  We took a few pictures with her and Pepper, so she can see that the hospital wasn't ALL bad.