TUBIE on the go!

There is an unwritten rule or unspoken secret that is a part of every day life with a TUBIE or other special needs child. Everything takes longer. Appointments, feedings, trips to the grocery store, car rides, packing for simple trips, everything. Deep down you know it would just be easier to stay home. Life is chaotic as is with young children. Multiply that when you throw in a feeding tube or any other medical needs. Unless you're living that life, you don't know this feeling. As a parent, you make it work. You plan ahead, you find life hacks along the way, you show up. You say yes to things. You own this life and make it your new normal. I've learned to do these things with pride in knowing it's these simple everyday tasks that allow you to show your child in just one more special way how much you love them. Here are some great travel trips when you're on the go with a baby and need to make the car TUBIE friendly.

1.  Always allow the tube to come out the side of the seat belt. There is the most room here and it won't get kinked. Kinked tubing doesn't seem like a big deal until you're on the highway hearing BEE BOO BEE BOO and have to pull over to re-prime and reset the pump. Do yourself a favor and keep the tube as free from seat belts (and little fingers) as possible to keep the food flowing.

2. We live in Wisconsin. We use a car seat cover with a zipper so that it can come on or off easily depending on the weather. Last week alone here it was 70 degrees and then 18 degrees just two days later. Arlo just loves to play with and now bite his tubing. Pulling the med port open is a new favorite as well. I had a genius idea the other day to shoot the tube out the bottom where the two zippers meet to keep it out of his reach. This one in particular is the JJ Cole Urban Bundle me and has two zippers that meet at his feet instead of one that wraps around to the side. 

3. I found the perfect ice packs on amazon (Fit & Fresh Cool Coolers Slim Ice Packs) that fit the exact size of his 500 mL bags that keep his formula cold all day long. We use one during the day for day trips and then switch it out at night. I also love how flat they are so that they fit easy in the pump bag without being too bulky.

4. Last but not least, hang your pump bag on the hanger hook near your tubie. It keeps everything vertical for car ride feeds, out of the way, yet accessible for you to reach and grab from the front seat if needed.

Remember, take pride in the little "extra" things you can do to show love no matter what that means. Say yes to simple plans or events even when you know it would be easier to stay home. Use these tips along the way, and bask in the smiles you see on your tubie when they get to experience life's treasures- whatever or wherever they may be! It's going TUBIE okay!

Emily Jasinowski