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!

Expect the Unexpected - Week of June 17th

"No one is so brave that he is not disturbed by something unexpected." ~Julius Caesar

Cameron has completed 7 surgeries at our local Helen DeVos Children's Hospital.  The list includes 4 hip surgeries (hardware in/hardware out), 2 eye surgeries and 1 tonsillectomy/adenoidectomy.  Tuesday he was scheduled for his 8th:  the intrathecal baclofen pump surgery. 

An intrathecal baclofen pump, also known as ITB therapy, is a surgically implanted device that delivers baclofen, a muscle relaxant, directly into the spinal canal to treat spasticity. The pump is about the size of a hockey puck and is attached to a catheter that runs to the intrathecal space of the spinal cord. The pump then continuously delivers small doses of baclofen throughout the day to help reduce spasticity and improve mobility.  

Cameron's surgery was the first on the list at 8:00am.  It lasted over 2.5 hours and required two points of entry: the left side abdomen and left side back near the spine.  When we saw him in recovery, he had already made a new friend with nurse Skylar.  Soon after, we were transported to our new temporary home, Room 520.  

The nurses were welcoming and Cam's new "job" was to lay flat and relax.  This meant eating while laying flat, drinking, and everything else.  On Wednesday, Ms. Ann arrived in the afternoon to have a short visit with Cam. It definitely made his day!

On Thursday afternoon, Cameron was scheduled to sit upright to see how things felt. It was a big adjustment from being horizontal.

He felt good enough to drive around a bit in his chair.  The abdominal binder will be in place for a few weeks to be certain everything is healing nicely.  Two groups of doctors checked in on our son daily- the pediatric docs as well as the neurosurgery team.

On Friday, Cam started feeling headaches and a bit of nausea.  We attributed this to him being upright and in his chair the day before.  By Sunday morning, our release and transfer to Mary Free Bed had been approved.  However, our game plan was derailed.  Cameron became very ill Sunday afternoon/evening.  Our kiddo wasn't quite ready to leave the children's hospital just yet... but fortunately, this story has a happy ending...in next week's blog! 

(P.S. A big shout out to Uncle Jon & Aunt Betsy in honor of their 80th birthday celebrations! Cam wanted so very much to attend, but was there in spirit 🤗)

Camology Quotes:

When the anesthesiologist was driving Cam in his hospital bed down the hallway for surgery, the following conversation ensued between Jane and her son:

"Excuse me, but could you please slow down?"

"Please don't take it personally, Doc.  He always tells his mom that all of the time in our van!"  

Jamming Along - Week of June 10th

"Happiness is like jam. You can't spread even a little without getting some on yourself." ~Anonymous

It was a seriously jammed packed week! 

We made our annual visit to Heidi's Farmstand to check in with one of our favorites, Ms. Pat.  She has known Cameron since he was able to fit in the front of the small shopping cart.  Every time we see her when she is working, she refers to Cam as her "boyfriend" and they both giggle.

It was very late Monday evening when Chris's youngest brother, Ulysses arrived with his girlfriend, Rae. They were spending two nights with us on their return road trip from Vermont to Kansas.  On Tuesday, it was back to work at Brody's Be Cafe. Cam saw one of our very good friends, Jenna, who just happened to be at the Ada location.

One of the best parts of working the hot dog cart is being able to spend time with buddies.  Best bud, Brody, and good friend, Madison, were outside alongside Cam to help sell lunch items and bring people over.

Work efforts were also in full-time mode at home.  It was strawberry jam production time!  Making the sweet treat is one of our traditions.  We truly believe the Michigan berries (and perhaps the large amount of sugar) make it the best-tasting stuff around.  Uncle Ulysses and Ms. Amanda provided expert mashing assistance.  

Ulysses and Rae were back on the road early Thursday a.m, with frozen strawberry jam. We were so happy they were able to visit and have a couple of days with us.  

Friday was another dual activity day.  In the morning, Jane took Cam over to GV for his job with the graduate PT students.  The college kids had an assignment to create a challenge for Cam.  They had a driving course all set up when we arrived.  Cameron went through multiple time trials.  He then moved onto a stand-up punch test where he was asked to press on the circles from a standing position.  While Cam was busy with the students, Dr. Lisa (head of the program) told Jane that she had recently been involved in an global online course and was asked who was an inspiration to her.  Dr. Lisa shared that she said Cam was her named individual!  She told Jane that he is always up for a challenge, has a positive attitude, is very empathetic and she is constantly learning from him.

After a quick lunch at home, Cameron was off to the Mary Free Bed Sailing Clinic at the Grand Rapids Yacht Club.  It was a warm, breezy day.  We saw our good friend, April, who was also in attendance.

Cam thought that getting into the sailboat may be a bit tough and not too comfortable.  We opted for the pontoon cruise around all of Reeds Lake instead.  It was a great day to be in a leisurely boat ride.

Early the next morning, we were off for the annual non-profit "Walk for the Challenged" led by Lori's Voice.  Chris is a board member and he arrived early.  Jane and Cam parked at the Berlin Raceway before the event began.  There were so many sponsors lining the track.  So many friends were in attendance and there was news coverage as well.  Members of the GVSU Dance Team snapped a pic with Cam and local newscaster Rachel Ruiz and her daughter posed with Jane and her son.  Friends April and Serenity as well as Cam all stopped on the racetrack to chat with Lori Hastings, the founder of Lori's Voice.

One of the highlights of the morning was meeting Chef Jenna, a local celebrity!  She owns Amore, where Cam's parents dined Friday evening (and highly recommend!).  Chef Jenna began a non-profit called Food Hugs which was represented at the Walk For The Challenged.  The Chef gifted Cam a Food Hugs shirt.  After the Walk, Cam and Jane drove to see Oma and Opa to spend the afternoon there.  It is always good to see them!

Sunday was the day to celebrate dads. Cam requested a surprise breakfast for his Daddio.  Jane ordered online and picked up his favorite first meal of the day. In the afternoon, we gave Chris a new hammock chair.  Cam presented his dad with a framed picture that he had created in digital arts at school.  Chris said it was his favorite one. Chris is Cam's hero and Jane knows he takes his role of fatherhood seriously, but is a premiere teller of bad dad jokes 🤣  

Camology Quotes:

When Jane and her son drove into the Rosy Mound community to visit Cam's grandparents, Jane read the sign out loud since it makes her smile.  It read:  SLOW Drive Like Your Grandparents Live Here.  Cam commented: 

"Humorous, Rosy Mound!"