Maddison Ohs, Special-Needs Parenting

Family Beach Trip 2018

Taking our Tubie to the beach

When you think about going to the beach with children, you know it’s going to be a lot of work, but for the most part it’s pretty straight forward. You pack the basics; towels, umbrella, snacks, floaty, sunscreen… You give them a bucket and a shovel and they play for hours.

Life with Maddison isn’t straight forward though, and I was slightly intimidated taking Maddison on her first real beach experience. Medically complex children tend to make things a little more… complex. But I did my best to think everything through ahead of time. I knew that doing something like a beach trip on a whim just isn’t possible,  so I had to make sure I did some serious planning before we left the house.

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I was able to plan out all the supplies I would need for our family

I packed all the regular beach stuff, as well as the extra things Maddison would need. She had a cooler bag all to her own with medications, extra ice packs, waterproof bag for the pump, tape, extra flush water and backup formula for Maddison’s feeding tube. 

I always pack for far longer than we plan on being out. You never know when there could be a traffic delay (or you just don’t want to leave the beach). I’m always erring on the side of caution when it comes to packing so I won’t get stuck in an emergency without medication or feeding supplies.

Alastair, Jackson, Maddison and myself all piled into the van and took the short 15 minute drive to our local Cultus Lake, here in British Columbia. The sun was shining, and I was beyond excited to have our first real family beach experience.

Feeding tubes and lake water

I started a little rule ever since Maddison’s feeding tube healed; she can only go in water with her button uncovered if the water is “safe”. “Safe water” is water I wouldn’t mind my child drinking like a fresh bathtub, clean pool, or a crystal clear lake. But if I wouldn’t want my child to actually ingest the water I will cover her button with waterproof tape.

Now I’m not concerned that the lake water is going to get into her stomach through the stoma. The stoma is the actual hole in Maddison’s abdomen that is feeding tube button is inserted through. Just like how stomach contents don’t come pouring out – the water isn’t going to pour into the stomach – but what causes me to cover her feeding tube is the stoma itself.

Water with sand, dirt, debris and higher levels of bacteria cause me to cover her button with a piece of Comfeel Plus by Coloplast. These small particles on the beach or in the water can cause irritation around the stoma that can cause abrasions and lead to infections. So I use this large transparent dressing which can give a waterproof seal around Maddison’s feeding tube and button. I couldn’t imagine how uncomfortable it would be for her to get a small grain of sand into her stoma. Since this was our first beach trip, and Maddison has a little granulation tissue, I played it safe and covered her feeding tube.

Ready to have fun!

As soon as we arrived at the beach, Jackson was in the puddle jumper and off in the water with his friends. I didn’t want Maddison to have to miss out on the water fun because she was still going to be hooked up to her continuous feed the entire time we would be at the beach. A while ago I purchased some waterproof drawstring bags from Amazon, and luckily one of the sizes that came in the set fit Maddison’s feeding pump backpack perfectly. I didn’t have to worry about it getting dirty or wet while we played along the waters edge.

Maddison loved being able to pick up the rocks and put them into the bucket. But being able to watch her have this experience, to experience what an average 1.5 year old would, was so sweet and surreal.

 

After lunch we were having too much fun to leave

So I decided to risk it and have Maddison nap under the beach umbrella. She doesn’t always nap outside of her crib very well. It was a pretty warm day, but thankfully I brought this battery powered clip fan I bought off Amazon as well. It quite literally saved our day. The breeze this fan gives off is surprising powerful, and you can adjust the fan speed and the direction of the head. I clipped it to the umbrella and it kept Maddison cool in the shade while she napped. I was super surprised, she actually fell asleep!

By the end of the day, both kids were sun-kissed and tired

I was so thankful we made it work. There are many times that we can feel bound and limited by Maddison’s disabilities. It’s true that our family is just different. Sometimes we just can’t do what we thought we could, or wanted to do. Over time, and with planning and practice things are becoming a little easier. We are learning more about what we can do with Maddison. It takes us a little step outside our comfort zone, but we can still make fun family memories.

Our next adventure; family camping trip this August.

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1 thought on “Family Beach Trip 2018”

  1. Keep on Keeping on! We too have a son with many of the same symptoms, his was caused by a genetic syndrome. It’s nice to read that someone else has experienced the same things. Thanks for sharing.

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