Feeding Tube Awareness Week 2015 Day 6

Friday, February 13th: Feeding Tube Fun!

We have so much fun with Jilli and her tube is a part of her so we have a lot of fun with her tube too! We have two choices for life with a tube, live depressed about the challenges or celebrate the journey. I really don't want to live my life depressed so we CHOOSE to celebrate.

Here are some fun pictures of fun we have had with her tube!

We make her tube fun! She wears pads each day to soak up drainage from the tube site, but we dont just use plain gaze, we use fun pads! She also wears belts to keep her tube in place. Those are fun too

We participate in the Children's Hospital of Wisconsin run/walk in September each year as our thank you to everything they do for Jillian!

Parties in hospital rooms. We have thrown multiple birthday parties at Children's. The funniest was Seth's 21st. We filled the bedside table with sushi and had a feast (I ate chicken, lol)

Tubie gear! This is Jillian getting ready to go see a family member who also has a tube

I will admit, Brent and I get a little goofy in the hospital, its how we stay sane!

Crib parties. We try to make her hospital stays as much like home as possible 

We decorate her feeding bag for special occasions. This one was for a surgery the day before Christmas eve

We put her pump in fun backpacks

Walks around the hospital

Our Tubie Princess!

 One of my FAVORITE fun tubie things that we are a part of is Tubie Friends! Tubie Friends is a non for profit organization that puts feeding tubes (and other medical equipment) into stuffed animals for children with those medical devices. We ship all over the world!
I volunteer for Tubie Friends as a surgeon. I put tubes into stuffed animals. I LOVE doing this and have been working with Tubie Friends for a year now and sent out over 50 animals last year. I am just one of multiple surgeons from all over the country.
I love working with Tubie Friends because it is a way for me to give back to the tube feeding community. The community that we have of other parents online that also have children with feeding tubes is amazing. We are so fortunate to live in the digital age where we have things like facebook to connect with other parents around the world who have kids with feeding tubes. It helps us to feel a lot less alone and they help to answer everyday life questions about having a tubie.
Tubie friends is a non for profit organization. That means we raise money to be able to make the animals.  Many of the surgeons work full time jobs elsewhere, and have tubies themselves. 
We use exclusively brand new Build-A-Bear animals, and we pay the same price as anyone else for the animals. We are always so grateful for donations because it helps us to be able to help more kids. I know how much Tubie Monkey has meant to Jillian. Monkey has gone to hospital visits, into surgeries, and to school with Jilli to teach her friends about tubes! It has been a great teaching tool.
One way you can help Tubie families is to donate to Tubie Friends to provide them with a friend just like their child.

Tubie Monkey ready to go into surgery with Jilli

Monkey has a backpack like Jillian

Me getting ready to put some tubes in bears. The silicone things on the table are the tubes.

She gives Monkey check ups

Jillian with her Tubie Friend

Tubie Monkey from Tubie Friends going to school with us!