Feeding Tube Awareness Week 2016- Day 6

Today's Topic:
Make a plan to educate 5 friends, family members, or media sources about tube feeding.

Playing princess candy land with my girl yesterday!

I have said from the start that there are a few key reasons why I blog:
1. It is easier to write everything down once and have our family and friends read it then to try to remember all the details to re-tell it over and over. It is not that I mind talking to people about it, infact I have spent my last two days talking about it all with a few people both for comfort and advice, but honestly there is a lot to remember and to try to tell everyone individually all the details would be exhausting and then I would forget to tell someone something and they would be mad and I would feel bad. I have had a few people get mad at me when I forgot to tell them something I had blogged about and then I remind them that both my mom and my husband have read stuff on here that I have totally forgotten to tell them about not because I was trying to be mean, but my head is full.
2. It is a good way to keep records. When genetics sends me a huge packet they want filled out and they want to know all sorts of little details it makes it a lot easier to just go back and look at old posts, It helps me keep track of patterns in her health. It is also a good way to look back and see things to be thankful for, both things that we made it through and happy times.
3. Its therapeutic. Its good to not hold everything in. Sometimes just getting out there what is going on helps me to process it.
4. To spread awareness. If you have never had something impact your life then there is no way to know about it. As humans we relate to real life. Something matters to us more if we know a real person with it, if we can put a face to it. Being a special ed teacher I have read about a lot of disorders and different needs, but it impacts me more when I have a student that has those needs. When most people think of tube feeding they think of elderly people in hospice, they don't think about 3 year olds living outside of the hospital. 
5. To help others. When we started this journey 3 years ago the best resources I found were blogs of other parents. Doctors can tell you the medical side of things, but they don't know how to bathe a child with a feeding tube because they have never had to figure out the logistics of it (nothing against them, but when you have not done something for yourself it is hard to explain to others). I was so grateful for parent blogs in those early days (and still am) because it was someone I could relate to and learn from. Part of why I blog is to give back to the tube feeding community so that maybe I can help some parents like other parents helped me.

I hope this blog has touched you in some way over the past 3 years, by either teaching you more about life with a medically complex child or by offering you support in know you are not alone. I don't blog for recognition or attention, that would not help anyone, but I really hope all of this writing has helped others along the way.

My goal for feeding tube awareness week is to show what life is like with a kiddo with a feeding tube. To show that it is not a scary thing, but it is hard.

If there is still a question that you have about feeding tubes or our journey, I have one blog post left tomorrow for feeding tube awareness week and would be happy to answer any questions I can. Either leave your questions in the comments or if we are facebook friends you can send them to me that way.

Jillian gets two of her meds orally... she LOVES them! Most kids ask for breakfast in the morning when they wake up, Jillian asks for meds

This is what Jillian's feeding tube looks like with the J extension in. She is fed into the j port and the g port is drained overnight. We keep a pad on it because it is a hole in the body so sometimes there is some fluid that comes out (most of the time around her g tube looks amazing). We tape her GJ tube to keep it from spinning.