Road trip with a G-Tube

We live in the Midwest, which means if we want to go anywhere, we have to spend hours in the car. In 2018, we spent over 90 hours driving to Maine and Florida. While we have the typical coping skills for keeping the kids busy, we’ve had to get creative with how to feed our tubie in the car.

Our daughter uses a blended diet that has to stay cold once opened. We prefer to use a cooler with ice or reusable freezer packs, but sometimes, these are not an option. For this example, we accidentally packed the cooler in the pop up. Oops. It wasn’t a big deal though. We paid for a cup of ice before we left town and stuck Paisley’s next feed in it. It stayed nice and cool until we needed it.


Problem number two is how to clean her pump tubing on the road. Stopping to clean tubing is a pain, not to mention gross. Roadside options are limited to gas station bathrooms and that is a big nope to something someone is getting their food from. Matthew has solved this problem by using a fast food cup.

He simply sticks the end of the tubing in an empty cup and purges the tubing. We keep water in the car for this purpose. Make sure, if you have any affection for the driver, that you get rid of the straw or tuck it inside the used cup so you don’t have an unfortunate accident.

Tube feeding on the road can seem daunting but it’s doable. What are your favorite tricks?

Ludington, Michigan

Ludington, Michigan is a cute town on the western coast of Michigan. With Lake Michigan on it’s doorstep and a beautiful state park, there is a lot to do.

But how accessible is it? Let’s talk.

Accommodations:

Like a lot of western Michigan, there are not a lot of chain hotels. The hotel space closest to the downtown and beach areas are locally owned and operated. Great for shopping local. Harder to figure out if they are accessible. Most seem to be a motel model, with doors opening directly to the outside and likely no elevator. If you need something in the first floor for access, make sure you call and talk to the staff.

We camp at the state park. We know how to make our pop up fit our daughter’s needs best and everyone likes toasted marshmallows! The bathrooms have the standard wheelchair accessible stalls as well as a family restroom/shower. The newer showers in Cedar campground are completely flat between the shower and dressing area. In Pines campground, there is a small lip, about an inch high. 

Food:

Downtown Ludington has a few locally owned places while the town in general has some pizza places, a Thai restaurant and a few chain restaurants. Our favorites are House of Flavors and The Weiner Wagon.

House of flavors is a couple of blocks from the beach and is attached to their ice cream factory. The food is filling but basic. As someone with a dairy and gluten allergy, I didn’t have a lot of choices. They were happy to help me find something but didn’t have any gluten free bread for a sandwich. I ended up with an iceberg lettuce salad, grilled chicken and salsa. Not my best meal, but not the worst either. My big kids loved their grilled cheese sandwiches, but the real reason you go to house of flavors is the ice cream.

They make it in a factory attached to the restaurant. They do have a dairy free sorbet flavor of the day, but it was lemon and I preferred to save my sugar consumption for marshmallows. For those who are curious, the kids ice cream defeated them. Maybe they’ll have better luck next year.

The Weiner Wagon is a food truck that parks all over Ludington and part of the fun is stumbling across it. In full disclosure, I did not eat there. Hot dogs are on my “do not consider food” list but there was a taco truck parked next door. Score! They offer kid friendly basics and more adventurous options as well. I believe the special of the day had Mexican street corn on it.

Activities:

Bike riding: Ludington State Park has beautiful paved trails for walking, riding or wheeling. They connect the three campgrounds to Lake Michigan, Lake Hamlin and the water trail.

Lake Hamlin:

Lake Hamlin beach is accessible by bike, walking or car. There are bathrooms, changing rooms and a concession stand. While there are not sand mats that would allow a wheelchair on the sand, they do have a sand wheelchair. You can rent paddle boats, kayaks, and paddle boards to explore the calm lake. If you have never tried water sports, it’s a great place to learn.

Lake Hamlin also has an accessible playground. The wheelchair accessible playground equipment was wonderful for my daughter, who likes to use the handrails like parallel bars.

Lake Michigan:

We spent time at two beaches. One is in the state park and the other was Stearns Beach. Both had sand mats onto the sand but only Stearns Beach went to the water.

Both had restroom facilities and concession. The state park beach has dog friendly area.

Kite Flying:

Kite flying isn’t really a measurable activity but it’s unique to the area. The stiff breeze coming off Lake Michigan begs for a lazy day watching a kite. And, for those with kiddos who can’t do other beach activities, kites are perfect. They are bright, move around and can be modified for different abilities. Paisley tends to drop the string so we attached a dog leash to the handle. She felt she was a big kid and we didn’t have to chase a kite down the beach.

Silver Lake:

We like to take a day trip down to Silver Lake to sand sled. We rent the sand sleds from Silver Lake Sand Box. They have kid, adult and stand up boards. Helmets and wax are included in the rental. You can access the sand dune by parking at the state park or along the street if it is a busy day. As of July 2019, the stairs that are mentioned on the website have been consumed by the dune. It’s still handy for climbing but no stairs are visible. Just the top railing. The sand sleds are heavy so be judicious when renting. Climbing up the sand dune with them is hard and your kids will get tired fast. Rent fewer then you have people so you have some extra hands to help carry.

Other things to bring on the dune:

  • Water. And more water. As much as you can carry. It’s heavy but you are going to need it.
  • Sunscreen. Sand reflects. You don’t want to look like a lobster.
  • Sunglasses. Sand reflects.
  • A picnic blanket or sunshade. You’ll want to stay awhile and there are no trees where you can sled.

Is the sand dune accessible for a wheelchair? Not at all. Matthew carries Paisley and it’s a lot of work. We also bring a g-tube feed and a place for her to sit. She likes to play in the sand while the big kids climb up and down the dune. Happy Sledding!

Medical Care:

Ludington does have a hospital. Thankfully, we have never had to use it, but it comforts us that it is there. We carry medicine, albuterol, and extra feeding supplies but we all know things can go wrong. Knowing where the closest medical facility is valuable.

If your summer is in need of a midwestern beach, check out Ludington and share your adventure!

Camping with a g-tube and cerebral palsy

We are camping this week! After many years of tent camping, we finally caved and purchased a pop up two years ago. My husband hit his personal limit after cleaning g-tube supplies outside. In the rain. At 2:00 am.

Things can get a bit tight with 5 people, a very large dog, and medical supplies, but we love it and christened her the “Taj maHAUL.”

Why camp?

Because it gives us opportunities we can’t get in a hotel room. Camp fires, letting the frogs lull you to sleep and showering in your flip flops are experiences everyone should have, at least once.

So how do we camp with a kiddo who has a g-tube and isn’t an independent walker yet?

Over the past 3 years, we have acquired some interesting equipment. Our bike was meant for use in a city with kids, but it is perfect for our Paisley, and Landry. She is safely strapped in with a great view. When she is sleepy, the seat reclines for added security. Our faithful canine can take a nap or let the wind blow through his fur on rides.

Most of our pop up is accessible by crawling. Paisley can go from floor to couch to bunk easily. We try to keep shoes out of the camper and sweep a couple of times a day to keep things clean for her but some dirty knees are inevitable. It’s part of the experience.

We keep Paisley’s blended g-tube food in the mini fridge. We dream of a larger fridge someday, so we can freeze ice packs for day trips, but right now, it’s nice not to worry about ice melting in a cooler. And, due to Matthew’s 2:00 am revelation, the sink has ensured rainy nights are no longer a problem for tube cleaning.

Is it perfect? Haha! Nope. The kids still fight, we store it in our garage, making us look like an episode of hoarders, and there is never enough storage, but it gives us a cushy place to start our adventures and we are thankful.

Why do bad things happen?

My disclaimer for this post: we all have had different experiences and are at different points in processing those experiences. What works for me, in my journey, may not work for you. It’s part of what makes our human experience beautiful. We are all on a journey.

My daughter was born too soon, to another woman. She was not able to stay in her birth family. Her brain bled. She has cerebral palsy. She has hydrocephalus. She has had 3 brain surgeries. She currently cannot run or walk the way other 3 year old’s can. She can’t orally consume her calories and has 4 g-tube feeds a day.

None of these things are fair. She is an innocent child who has never harmed another living creature. Why did all of this happen to her? Where was God?

I don’t have answers.

What I do have is my belief that we live in a broken world. Bad things happen to good people. Good things happen to bad people. Life can be unfair, especially to the innocent.

Where was God? Why did this happen to Paisley? I believe all of this happened to Paisley because of a long string of events. It wasn’t a curse. It wasn’t to make a point. Bad things happen. Her birth family had circumstances beyond their control. They made the best decision they could with the resources and information they had at the time. Her premature birth was something they did their best to prevent but it couldn’t be stopped. Her medical conditions are a result of being born at 24 weeks. Her doctors and nurses did their best to help her.

So where was God? Why didn’t he stop it? Bad things happen. Our lives will never be perfect, but we are called to give to others. I believe God was with her doctor’s as they tried to revive her. God was with us a year before her birth, prompting us to complete a home study and opening our hearts to another child. God was in the knowledge of her lawyer to help complete the adoption and in the hearts of the volunteers who transported her to Indiana. He has been in the midst of her therapists, doctors, and new people who have had information we needed.

Can God work through supernatural miracles? I believe yes. But more so, I believe He works through the skills and talents of others. We are called to give to our fellow human beings and if more people gave of themselves, there would be less suffering.