Sunday, June 30, 2024

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!

Sunday, June 23, 2024

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 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!"  

Saturday, June 22, 2024

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!"

Sunday, June 9, 2024

School Out/Summer In - Week of June 3rd

Happiness is waking up, looking at the clock and finding out you still have two hours left to sleep." ~Charles M. Schulz

And just like that, Cameron's sophomore year of high school came to a close on Wednesday, June 5th. 

His afternoon bus driver, Ms. Christy, has known Cam since he was an elementary student.  These two share a special bond.  After sending this picture, Ms. Christy told Jane that "I'll keep this in my feel good file so I can look at it when I'm feeling down."

After waking up at 5:45am every week day during the school year, Cam wasted no time adjusting to his "sleep-in" schedule on Thursday morning.  His summer hours of awakening typically occur during the timeframe of 8-8:30am.  

Cameron has worked with the Grand Valley State University graduate PT program for many years now. If Dr. Lisa asks for assistance, he is always eager to help.  On Friday, a request had been made for Cam to be videoed while driving his power wheelchair, following direction provided from a student.  

Jane and Cam arrived after lunch and had fun exploring the large innovation center.  They found many other mobility contraptions in an office during their exploration.  The PT team asked Cam to navigate areas and conduct some hairpoint turns.

In the early evening, it was off to another adventure.  At Fishbeck, where Chris works, an outdoor summer shindig was in full swing.  Cam, his mom and Ms. Amanda arrived to see an assortment of food and drinks. There was even an ice cream truck with multiple flavors to choose from!  After eating dinner, Cam and Amanda headed back home while Chris and Jane made their way to have dinner at Bonefish Grill.

Saturday afternoon, it was quite cloudy and overcast but we still ventured up north to visit cousins.  Coco prepared a special birthday dinner for Jane with homemade chocolate chip cookies for dessert.  Cam helped taste test the dough before it even went into the oven.  Freshly baked, warm cookies are definitely one of our top favorites!

Sunday was Jane's birthday and Oma and Opa had invited us for dinner.  

We arrived later in the day and the weather cooperated.  After a lengthy stroll outside in the warm breeze, we determined we could dine outdoors on their community patio.  Since Cam's grandparents are on the ground floor, it's a short walk to the peaceful seating area.

Oma surprised Jane with a cake from our family favorite Michigan bakery, Ryke's. The raspberry filling on the inside and the ice cream accompanying our dessert made for the perfect combination.  

Truly, though, the best combination is being together and celebrating each other.

Camology Quotes:

Change can be difficult, especially when it's a part of a long-standing routine.  Cam's parents didn't think switching their son's toothpaste would be too traumatic.  The evening that they did, Cam's sour face said it all.  They were not, however, expecting the following response from their son:

"The indignity I go through!"

Sunday, June 2, 2024

The Art of the Possible - Week of May 27th

"The purpose of art is washing the dust of daily life off our souls." ~Pablo Picasso

Cameron attends an adaptive art class in high school. Near the end of the school year, there is an open house to showcase all of the artwork the students have created. Cam's parents were both able to attend and they were very surprised by the display.
At first, Jane thought the pottery on the table was for decoration, but her son informed her he had made it. The arrangement included a trio of small bowls for candy, a large mug and a ceramic flower holder to place stems in. In addition to those items, the wall was adorned with beautiful artwork and expressions. 
One piece that caught the attention of both parents was a piece entitled:
"Important Questions and Feelings"
Where do you think you'll be in the next 5 years? 
I don't know.
What I'm most looking forward to in my life (short term): to practice and learn new stuff.
What I'm most looking forward to in my life (long term): To be in a group home!
Someone who has had the most impact on me and why: My mom and dad because they help me a lot.
Other people you will never forget that are important in your life right now: All of my friends.
What are you most thankful for? My family and friends!
I think others would say the best thing about me is: That I am nice and kind!
Something most people don't know is: That I am not always nice to my parents.
I was most scared when: Really loud noises.
The most important thing I've learned about life so far is: You should never be upset about what how you are or can't change.
Bucket list (things I want to do before it's too late!): I want to be more independent!
"A Reflection from Me:"
Write a short note to yourself about anything you want.  Always be Awesome!!!

It seemed like a bit of a mini reunion seeing some of Cam's favorite people including Mrs. Festian and Ms. Michelle.  He also saw his 7/8 teacher, Mrs. Wells.  Jane was able to gather the pottery pieces and bring them home to save them from the bus ride.

Oma and Opa stayed with us for two nights. 
We all surprised Cam by not telling him about incoming visitors, Auntie Karen and Sue. He was so very happy!  It had been almost two years since he'd seen Karen. The sisters traveled from the Chicago area and booked a cabin at the campground we all used to stay at, Hungry Horse.  We all enjoyed each other's company during our dinner.  The evening went by much too quickly.
Jane drove Oma and Opa back to their home on Friday while Cam was at school.  Having his grandparents stay with us is always a highlight.  Even as he's grown older, he still requests in-person good nights from his family.

In the afternoon, Cam's mom picked him up from school since he was scheduled to work.  At the Grand Valley University building downtown, the Physical Therapy graduate students awaited his arrival.  In essence, Cameron acts as their "live" PT patient and he helps them understand the best way to work with him.  They ask him multiple types of questions and they interview Jane about his background and early years. 
At the close of the session, we talked about the last baseball game scheduled for the next day.  The group of PT students asked Cam if it was WMML?  He emphatically told them it was.  They couldn't believe it since a few of the girls in his group were actually signed up to volunteer!

Saturday morning, Chris and Cam headed to the ball park, while Jane was scheduled to attend a bridal shower.  Cameron was fully supported for the final game of the season.  The GVSU PT grad students rallied around him as volunteers. Auntie Karen and Sue cheered on Cam before they were back on the road towards Chicago. (We are so grateful they made the long trip!)
Ms. Barbara and Ms. Kathy and husband Kevin were happy spectators too, seeing their former grade school students, Cam and Brody.
After the game, each kiddo receives a West Michigan Miracle League medal for being a participant in the spring season.

Later that same day, a graduate open house was held at Brody's Be Cafe.  Both Brody and Cam were invited by Addy, a senior grad and peer helper in their classroom.  She was happy to see the buddies and thanked them for coming to support her. 
It's strange to think that in just 2 years, Cameron and best bud, Brody will be graduating as well!

Camology Quotes:

Monday was Memorial Day.  Jane and her son always make a point to thank Chris for his service from when he was in the Marine Corps. Cam's dad mentioned he was donating blood this week to which his son commented:

"Dad, you're helping your country in two ways- giving blood and that you served your country!"