Wheelchair Sports Camp - Week of July 22nd

Summer Camp: "Where every challenge is an invitation to grow, and every activity, a chance to glow."

Since Cameron's extended hospital stay canceled one of his planned camps, he was relieved that Wheelchair Sports Camp was still on the agenda for this week. 

Wheelchair adaptive sports, also known as adaptive sports or parasports, are sports that have been modified to allow individuals with physical disabilities to participate. Wheelchair adaptive sports can be beneficial for individuals with physical disabilities in a number of ways, and Mary Free Bed Rehabilitation Hospital strongly supports wheelchair adaptive sports. They can help improve physical fitness, strength, and coordination. 

They can also provide a sense of achievement, boost self-esteem and confidence, and promote socialization and a sense of community. These sports are designed to be inclusive and provide the same level of competition and enjoyment for individuals using wheelchairs as for those who do not.  Mary Free Bed Wheelchair and Adaptive Sports is one of the largest programs of its kind in the United States. This was the 40th year anniversary, so the camp shirts were extra special with a new logo.

The 7-18 year old kids are divided up into groups based on age brackets.  Monday through Thursday, a packed schedule is followed beginning at 8am and ending at 4pm daily.

Cameron was assigned to Group A and a longtime friend, April, was right by his side.  A nurse they both met last year, Ms. Morgan, was dedicated to their band of older teens.  

Each day, a different sport was associated with every hour.  

Monday included cycling, dodgeball, lacrosse, basketball and handball.  

Tuesday's agenda was dodgeball, pickleball, basketball and softball.  Cam had to forgo kayaking that day due to his surgery.  

The line-up for Wednesday: basketball, tennis, cycling, football and team handball.  

Thursday rounded things out with a day of tennis, team handball, cycling, basketball and softball.  Then, the last thirty minutes of the afternoon was spent with the Allendale Fire Department.  The annual event focuses on two fire trucks dispersing hundreds of gallons of water onto the attendees.  It was such a warm day, the refreshing coolness made everyone smile.

Cam experienced some personal challenges during the week, learning to use his arms and hands in different ways with his baclofen pump.  He persevered with the help of his friends and Ms. Morgan and definitely felt successful by the end of his time spent there.

Friday morning, tennis, dodgeball and basketball were all in full rotation.  Parents were invited for the certificate ceremony that took place after lunch.  Chris and Jane were both in attendance.  It was so interesting to hear the history from 40 years ago and the trailblazers who launched the Junior Wheelchair Sports Camp.  Cam already requested a reservation for next year's session.

Saturday evening, we welcomed our dear friends we call family from North Carolina.  Jane's lifelong friend, Leslie and her husband Wes, along with daughters Erin, Ali and Ali's fiance, Daree were renting our family cottage for the next week. 

After breakfast on Sunday, multiple vehicles made their way to Montague.  We enjoyed a picnic lunch with our cousins and made our way down to the beach.  Cam was in his beach chair for the very first time this summer.  Although he couldn't fully submerge in the lake yet, it wasn't too much of a loss based on the cooler water temp.  The North Carolina crew couldn't believe how much beach there was.

The Weatherford fam had to depart earlier than usual that late afternoon.  Chris and Jane were headed to an outdoor concert at the Meijer Gardens.  Cam's directive took him to Culver's for a tasty dinner pick-up and hang out time with Ms. Kaylee.

It was a big week for Cameron and by Sunday night, he was very ready for an earlier than normal respite!

Camology Quotes:

Cam's surgical implant has created many benefits.  It has, however, led to a bit of frustration due to the change of his muscle tone.  Using the cycle at sports camp this year was much different from last summer. The first day he tried cycling, he felt like he was going to fall off the bike.  He was determined, though, and after multiple practice sessions, by the end of the week, he conquered it. 

"Mom, did Ms. Morgan send you the video? I did it!"

Packing It In - Week of July 15th

 "Time is a circus, always packing up and moving away." ~Ben Hecht

When people visit that you don't see as frequently as you'd like, do you feel the need to attempt too many activities?  We've learned our lesson, somewhat, in that regard.  

Our simple challenge is to create events that include a busy day, followed by a more restful day.  It allows the energy level to remain intact and those <18 to continue to feel entertained.

The first weekday of "Grandma Sue and Layna time" was spent doing our own thing.  Cam was at rehab for PT and OT while Jane and Grandma Sue were off to visit Oma and Opa. Layna went swimming with Ms. Amanda's nieces and nephews in the late afternoon and Cam and his dad had some quality time together.

Tuesday's schedule included Brody's Be Café for a couple of hours to see Cam in action to assist with the hot dog cart. The farmer's market, adjacent to the café in the summer months, was busy and Cameron saw his high school teachers.  Layna loved helping too and seeing Ms. Amanda.  Snack time back at the house is more fun with a cousin.

Following our simple challenge, Wednesday was a more restful day, playing games at home.  Cam had his therapy time, while Layna and her Aunt Jane were off to have their annual pedicure together.  Grandma Sue caught up on some reading.  It was our last day with Ms. Amanda that week, so Layna and G. Sue said goodbye.  Our evening dinners at home were a treat with everyone pitching in to help.

Thursday was our baking day!  Cam and his mom taught Grandma Sue and Jalayna how to make homemade applesauce and apple pie.  Multiple batches of applesauce were completed.  We also finished 6 mini pies and 2 full pies to freeze.
During our breaks, we played some games.  Guess in 5 is one of our new favorites.  On a card is a picture of an animal and the other player can only ask 5 questions in a effort to determine which creature is shown on the card.

Friday was our divide and conquer/finish together day.  It was a working day for Cameron and he was scheduled for 2 Grand Valley University sessions.  The graduate PT students were ready to learn and Cam was eager to teach them about his new baclofen pump and how things had changed for him.  And it turned out that one of PT students was a family member of the apple orchard owners where the "hard to find" early transparent apples were from.  Sierra's parents own G's Orchard in Wayland and she was one of the students that Cam had the pleasure of working with.  During that same timeframe, Chris and his niece were on their way to SkyZone, the indoor trampoline park.  Grandma Sue found it very relaxing to sit on the front porch swing.  That evening, we dined outside at a local favorite, Cascade Roadhouse.  Cam and his cousin Layna both chose the chicken tenders and their grandma decided to try to lake perch.  Everyone enjoyed their dinner.

Saturday was our final full day together.  After an early lunch in Grand Rapids, we made our way to Montague to see our cousins and be near the lake.  Cam isn't able to be fully immersed in the lake water yet due to his surgery.  He and Grandma Sue had some big laughs relaxing under the beach umbrella on the lower deck.  We brought dinner, along with the homemade applesauce and apple pie that we had made just two days prior.  Everyone declared both offerings were most delicious!

Sunday morning, it was time to say our goodbyes/see you later to Cam's grandma and cousin.  Since our visits are more frequent now, it's not as traumatic as the first few times.  It's still tough, though, to pick a favorite moment or activity.  It seems that we all simply enjoy being together.

Camology Quotes:

With the upcoming world games on the horizon, Cameron is thinking about the future.  Cam is super impressed by his cousin's skills.  

While she was showing him one of her stretches, he declared: 

"Layna, I think you should be in the Olympics because you are the most flexible person I have ever known!"

Family Included - Week of July 7th

"Family is not an important thing. It's everything." ~Michael J. Fox

"In family life, love is the oil that eases friction, the cement that binds closer together, and the music that brings harmony." ~Friedrich Nietzsche

As Cameron is adjusting to his new baclofen pump, he is finding it much easier to use his arms and hands.  He will continue working on his goals daily as the healing process continues.  

While he was hanging out with Ms. Amanda on Monday, he put his skills to good use making homemade blueberry muffins.  They were very delicious!

Wednesday was Chris's birthday! His family took him out for a Mexican dinner at one of their favorite places, El Centenario.  After gifting him a customizable light up sign, he created a "Thank You" message with his new signage.

Previous to Cam's surgery, he was scheduled to spend five nights at Indian Trails Camp.  We had to forgo that venture based on the elongated hospital stay, but it did mean he was well-rested for upcoming activities.  

On Friday, our dear friends and longtime neighbors were celebrating their third daughter getting married.  The sisters were Cameron's best buddies growing up and we haven't missed any of their nuptials yet. The outdoor setting was beautiful and the passing clouds helped ease the heat a bit.  Megan and Nathan have joined in our collective family dinners over the years, so we know Megan's husband-to-be quite well.

After exchanging vows, the sweet kiss between them made Cam smile and laugh.  We captured the moment Cameron saw them.

Following the ceremony, the beautiful barn adjacent to the outdoor setting housed the reception area. 
Megan is very environmentally conscious.  The place settings were all thrifted china, silverware and glasses.  The mismatched place settings were very elegant.  The Mission BBQ was a delicious dinner and the couple's dessert choice was a huge assortment of donuts from a local bakery in Holland.  We snapped the traditional picture of Cam with all of the sisters.  A big congrats to Megan and Nathan!

Saturday, we began preparing for our Arizona family to arrive in the evening.  The flight from Phoenix to Grand Rapids takes most of the day for Grandma Sue and Jalayna.

They arrived at 6pm and we were so happy to see them once again!  Now that their visits typically occur twice in one year, we fall into our routine pretty quickly.  Everyone was pretty exhausted Saturday evening and slept in a bit on Sunday.

We decided the first full day of our family visit would be a relaxing one.  Layna helped her Uncle Chris with lawn mowing by keeping him company on the rider mower.  Cam and his cousin chatted away about different things and embarked on a few staring contests.  Both Grandma Sue and Layna loved seeing the difference in Cam's flexibility in his arms and hands.

After an early dinner, Jalayna requested a trip to the park.  The Cascade Park is just a few miles from our home.  The accessible playground is a bonus since it features a ramp that Cam can drive on. Layna is quite the gymnast.  As she was maneuvering the monkey bars, her cousin was driving underneath her in between her swaying back and forth.  Jane even had a turn on the swings with Layna while Cam and Grandma Sue hung out together.

We created our calendar showing the events to come during the "Grandma Sue & Layna Week" so we could all keep track of the schedule.  As Cam's cousin and grandma already know, Cam himself is considered a real-life calendar, memorizing all events and keeping track of everything himself.  His parents, however, rely on their electronic schedules and are thankful that Cameron keeps them all moving in the right direction.

Camology Quotes:

Cam's vocabulary can sometimes take us by surprise.  What's also fun, though, is his ability to recognize social cues in any conversation.  His latest interjection: "I know this is off-topic, but..."

The Mary Free Bed Experience - Week of July 1st

"Happiness is the highest form of health." ~Daila Lama

"I've met a lot of great people on this journey!" ~Cameron Jackson Weatherford

Mary Free Bed Rehabilitation Hospital has a storied history. Its roots date back to 1891, when a small group of women wanted to help people who couldn’t afford health care. Seeking support from the Grand Rapids community, they passed around a little black purse asking anyone named Mary – and anyone who knew someone named Mary – to donate 10 cents. Mary was the most popular woman’s name at the time, so the group quickly raised enough money to fund a bed at a local hospital. It became known as the first “Mary free bed.” As those needs grew, so did the group of women. It became incorporated in 1911 as the Mary Free Bed Guild of Grand Rapids. Mary Free Bed began providing rehabilitation to adults in 1953, and beds were filled throughout the polio and thalidomide crises. And through its first century, a growing Mary Free Bed occupied several buildings as programs and services grew to meet the rehabilitation needs of the region. Initially, the Guild focused on children: 1920 – Sponsored the first pediatric orthopedic clinic. 1921 – Brought the first trained physical therapist to Grand Rapids. 1923 – Established accessible classrooms at Grand Rapids Public Schools so children with disabilities could attend school. 1930 – Opened the Children’s Convalescent Home. 1938 – Developed The Brace Shop, a forerunner to Orthotics. 1946 – Created the Juvenile Amputee Training Program, which became a national model and was featured in a Life magazine article. 

Now 120 women strong, the Guild has representation on all hospital boards and committees. Its reach extends into the community, where the Guild has donated more than $25 million to dozens of organizations dedicated to furthering the quality of life for people with disabilities. That includes the lead gift for the Mary Free Bed YMCA, the world’s first universally designed health and wellness facility.  Cam's mom is a proud member of the Mary Free Bed Guild.

Cam was off to the exercise races this week.  With Mick, his PT, he drove right up to a specialized bike and put in close to a mile of leg work on Monday and subsequent days.  

Cameron's inpatient room was on the 3rd floor and the outdoor area with seating continued to be a favorite spot for dinner.  Thanks to Ms. Ann for hanging out with her buddy so she could see firsthand he was gaining new skills with utensils.  

On Tuesday, some of the Guild members appeared with their awesome hospitality cart filled with all kinds of options to choose from.  Cameron picked out a pack of playing cards and a squeeze stress ball.  Sydney was Cam's assigned OT (occupational therapist) and we quickly realized she was very creative.  To assist with a continuous arm stretch, Sydney had brought in knee mobilizers to use.  Ms. Deb, the recreational therapist, had stopped in to check on Cam as well.  As she watched Sydney place the knee mobilizers on Cam's arms, she had a puzzling look.  When everything was explained, Cameron, as well as Sydney and Deb could not stop laughing!  

During the extended stay, multiple packages
were received.  Jane's coworker sent a "lay flat duck light" which was a very unique, silly squeeze nightlight for Cam to use in the hospital.  Fishbeck, where Chris is the IT Director, sent over a huge cookie bouquet displaying a baseball theme with a Detroit Tigers standout.  Aunt Joyce and Uncle Joe sent two enormous packages of Oreos! Aunt Betsy and Uncle Jon and fam gave Cam an assortment of donuts, jam, a handmade cousin card and a cozy "Fishigan" sweatshirt.

Cam met Vandy, the in-house pet therapy dog.  Vandy only provides comfort to patients and is not allowed to be petted by a parent or caregiver.

Thursday was the 4th of July.  We requested a three-hour pass to take Cameron out for dinner.  We had a bit of a tough time finding a downtown establishment that was open on the holiday and finally found an old favorite.  HopCat is a restaurant and bar chain based in Grand Rapids, Michigan, United States, with seventeen locations in eight states.  We opted to dine outside and Cam ordered the appetizer sampler, which included a nice assortment.  Since our son has never been a big fan of loud noises, being at Mary Free Bed during the holiday was a positive experience.

On Friday, the dietician, Ms. Tracy, stopped in for Cam's feedback regarding the meals he had during his inpatient stay.  Cam declared a positive review and the woman overseeing it all was so pleased.

Saturday was our official discharge day!  Cameron had spent 8 nights solo at Mary Free Bed.  We were incredibly proud of our son for achieving this independence on his own.  After meeting one last time with the inpatient doctor, Cam was given the all-clear to say goodbye.  

Part of the Mary Free Bed tradition includes a special send-off.  The nursing team on staff sets up a human open tunnel with light sticks and bubbles.  It is a celebration of hard work and a new chapter.

Cameron requested a Culver's lunch to commemorate the end of his inpatient stay.  To our surprise, he ordered a corn dog.  He hadn't eaten that hot dog type since he was much younger.  Upon entering his home and settling in, we realized the reason for the unique order.  He wanted to practice his new eating skills solo with the corn dog!

Cam declared it was wonderful to be back in his own bed after almost 3 weeks.  On Sunday, after a very restful evening for us all, we ventured northward to see our cousins and soak up some much-needed vitamin D!

Camology Quotes:

During inpatient therapy, Cam really began to see the changes in how his hands were opening, increased flexibility and general loosening of his muscles due to the baclofen pump. He told Chris & Jane upon his return home: "Thank you for changing my life, parents!"  

Pumped Up - Week of June 24th

"Titration is a way to limit potential side effects by taking time to see how your body will react to a drug. In titration, the medication is started at a low dose. Every couple of weeks, the dose is raised (“up-titrated”) until the maximum effective dose (“target dose”) has been achieved or side effects occur." ~Definition of titration in the medical field

We were not surprised to learn that we would be staying at the Children's Hospital instead of transferring over to Mary Free Bed.  The docs asked Cam to lay back as flat as he could to help with extreme headaches and vomiting.  By Tuesday, he had improved and was able to enjoy a visit with the pet therapy team.  A MRI was scheduled and Ms. Ann stayed with Cameron so his parents could enjoy a dinner away from the hospital grounds.
Another MRI was scheduled for Wednesday morning.  We kept our sense of humor during the extended stay.  Chris left a message on Cam's door: "Back in an hour or two. Do not give away from room please! ~Cam"  Ms. Ann provided some awesome wall art created by her kids and grandkids.  Cam's room was in the tower of Helen DeVos shown in the picture.

On Thursday, the neuro and peds docs gave Cameron the "all clear" for discharge directly to Mary Free Bed.  Although the extension to our stay wasn't welcome, the nursing staff was exceptional.  

One of Cam's favorites was Monique.  When she introduced herself to Cam, he was having trouble remembering her name.  She told him "My friends call me 'Mo' so you can too!" Finally, by the third time she checked on him, he said "Hi Mo!" and she replied "See Cam! Now we're friends!" She also shared one of our favorite "bad" jokes of the week... "What do you call cheese that isn't yours...Nacho Cheese!"  Linda, who's been an RN for more than 35 years was with us three times over the course of our stay, sharing her positive outlook and calming demeanor everytime.  Haleigh and Meghan endured a grueling night shift with us of extremes, which they took in stride.  Rachel was a nurse tech who taught us all the proper ways to shift, move and position Cam.  

We said goodbye to the children's hospital and drove the ten-minute stretch to Mary Free Bed Rehabilitation Hospital.  Cam was scheduled for a minimum 1-week stay.  The setting was peaceful and far less noisy than the main hospital.  Cameron's room overlooked the circle drive in the front of the building and one wall of his room had a "wallpaper" picture of the beach with surrounding trees.  His scheduled was posted on the tv for Friday: 4 therapies per day which equated to two sessions of PT and OT each.  

Chris stayed with his son Thursday night but we convinced him that Friday evening, he could stay by himself.  His famous pout face that he learned as a toddler reappeared, but he persevered.  The nurses were checking every couple of hours and there was a call button attached to him.

Cam's good friend, April, popped in to visit him on Friday.  They began the titration process of the baclofen medicine on Thursday afternoon by increasing the dosage that the pump releases to the catheter.  The titration process is tricky since the upward limit is high, but other areas are affected due to the increased looseness of the muscles.  Therapies were also on his calendar for Saturday and Sunday.  For the first time ever, we caught Cam dozing off in the late afternoons.  

Ms. Tacy, a sweet friend who works at Mary Free Bed, came in on her vacation to visit Cameron and brought him some yummy peanut butter cups as well as 4th of July glowsticks and a light up cup!  

A big bonus was eating our dinner as a family outside on the weekend evenings.  The greenspace on the third floor was relaxing and refreshing!

Camology Quotes:

Prior to Cam's second MRI, the sedation anesthesiologist asked Cam if he still had headaches to which his response was: "They have dissipated." 

Favorite "bad" jokes from our children's hospital stay... 

From Doc: How do you know when a joke is a dad joke? When it becomes apparent!

From Chris: What kind of jeans do I have? Mom and Dad's

From Cam: How does an eye get its medicine? An IV!