Feeding Tube Awarenss week 2015 day 2

Monday, February 9th: Spread the Word!
Spread the Word that it is Feeding Tube Awareness Week® and what this week means to you.

For us this week means education. Education is a strong tool (just ask a teacher, lol)

There are many people who need feeding tubes for many different reasons. There are many people, who like Jillian, still have no overarching diagnosis just a list of reasons why a feeding tube
is necessary to live.

My goal for this week is to give you a little window into life with a kiddo who is medically complex. We are very open about our story, because it is not just our story. There are so many people who have joined us along the way,  prayed for us, and loved us and have become a part of this story. In reality this is all part of His story.

We open the floor this week to questions. What do you want to know? We were at lunch on Sunday and Jillian slept through lunch in my arms. Her backpack was on the table and you could see her tube running from her backpack to her. There was a little girl at the table next to us. She noticed Jillian's tube and asked her mom about it. Her mom just dismissed her. Then she told her not to look at it. All in a whisper tone. At this point these interactions are normal. Frequently if I hear it and feel like I can politely join their conversation I will. This was not one of those times I felt I could.

Children have questions. Adults have questions. Honestly when I see a person in public with a tube I have questions too. Mine are a little different at this point and are more about offering support, but I still have questions (what brand tube do they have, why do they have a tube, does eyour child have a Tubie Friend yeat, ect.) Think about the things you say to kids when they have a question about someone with differences...

When you say...
Don't look at it.... (you are really saying there is something wrong with that person)
Don't stare (you are really saying don't question, there is a big difference between a child trying to figure out why and someone staring with a mean look on their face)
When you dismiss them (you are missing a learning opportunity)
When you walk away quickly (you are say that person has something to be feared)

The best choice is to respectfully let your child question. If the opportunity is there let the child ask the parent or child with tube why they have a tube. Even if you don't know why the child has a tube, just saying "just like you eat with your mouth, for this child it is best for them to have their food go right into their tummy" For most children, that answer is perfect, and what I use when most kids ask me why Jillian has a tube. I personally have yet to be upset by a child asking a question and trying to learn. It teaches that everyone needs food just some people get it differently and that is ok.

If your child is close to another child with a tube (at school, church, ect) take time to talk about it with your kid. It makes it less taboo. Talk about differences about the child AND similarities that the two children have.  Make it a point to include the child as you would any other child. Yes, some things will be different, however your children will share many similarities.


So please don't be afraid to ask questions. I don't have answers to all of them. Here are some the most frequent questions I have been asked with their answers:

• Why does she need a tube?
• Jillian's digestive system does not work properly. Without a tube she is not able to get enough nutrition to grow and live. Without a tube she would have aspiration pneumonia a lot more.

• How long will she need it?
• I don't know. I dont hold the answers to the future. Right now we say she will need it as long as she needs it. If that is forever then that is what it is. If at some point she is able to eat SAFELY by mouth then we will be grateful for that too. Right now we are just grateful that she has the tube because it helps her so much

• How long is she hooked up to her pump?
• She is "eating" from 10pm one day until about 4:30pm the next day. We fill her pump with milk every 4 hours during that time. 

• What is her diagnosis?
• Right now Jillian does not have a diagnosis, just a long list of symptoms. Tomorrow we have a 2 hour appointment with genetics to start the process for total genome sequencing. We are hoping this will provide some answers. 

• Can she eat anything by mouth?
• No, she is can't. She take a medication by mouth that needs to be taken by mouth to work correctly but otherwise she is NPO. There are people however that have tubes that are able to eat by mouth some

• Can she go swimming?
• In well kept clean pools. She has a hole the leads directly into her stomach and can be a quick entry point for bacteria and other yucky things. For that reason she does not go into natural water because of the other things in the water.

• How does she take a bath?
• Just like anyone else! We leave her pad around her tube and tape the tube to the pad and skin. This makes it less likely to come out during bath time.  Sometimes she is off of her pump for a bath but sometimes she is not. 
• Is she going to grow out of this?
• Well that question implies that we know what "this" is. We know why she needs a tube but we don't know what is causing her symptoms. 

What are your questions? Please comment below or on my facebook page and I will do my best to answer, because knowledge is powerful!

Here is what Jillian's current tube looks like. It is an AMT G-Jet. The G part goes to her stomach, the J goes to her intestines. The lady bugs around it is her pad. She gets a new one each day and they are made by Kangarootique!