Feeding Tube Awareness Week 2017 Day 3

Today's topic focuses on the Positives of tube feeding.
What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding fueled you or your child’s life? Dispel myths that people have about tube feeding.


Feeding tubes for my girls have meant living. I have seen and heard people say that needing a tube to live is no way to live but trust me each day my girls prove the opposite.  They are able to do so many things because of their feeding tubes.

Here are some pics of my kids being kids, without their tubes that wouldn't be possible!

Jilli got to see her friend Caroline on Monday and Caroline recently got a wheelchair. We go in a few weeks to meet with rehab and the plan at that time is to start the process of ordering Jillian's wheelchair. This has been in discussion for some time. Jillian can walk but not for long distance and when she pushes her muscles too much it effects her breathing and gut motility. The wheelchair will not be for all of the time but for when she needs it. For things like zoo class where she wants to be at the same height as her peers. We have been talking with Jillian about her wheelchair for a while and she has always been excited about it and said it was cool as long as it was pink, but for some reason once she saw Caroline in hers she freaked out on the way home. To help her we found some Sesame Street clips with a girl in a wheelchair and I have been working to find other shows as well. Yesterday afternoon she came over to me and we were talking about her wheelchair a bit and she asked if she still gets to have her leg braces when she has a wheelchair and I told her yes, she got so excited and gave me a big hug and told me that I am the best mom ever... apparently those are the qualifications lol!

Also, people can I plead with you for a sec, please if you are going to post something online, make sure it is true first. I watched a meme be spread praising a government official for a fake meme, what the meme says didn't happen. Research, and take responsibility if you post something fake. If you help in the spreading of something fake you are just as guilty as the person who started it. Research.

I will say I was excited yesterday to see Scott Walkers' plan for the waver program for families with special needs. Right now each county manages the program and now the plan is that it will be state wide which will be helpful to families like us where Jillian is 5 years away from reaching the top of the waiting list in our county but if we moved a couple miles over to the next county we would already be seeing this program. This program pays for respite and things insurance does not cover but are needed, like Jillian's expensive bed. I am really hopeful that this goes through and this would be a step in the right direction.