Feeding Tube Awareness Week

Do you love someone with a feeding tube? Please join me in helping raise awareness of feeding tubes this week. Whether you are newly facing the decision about getting a feeding tube or a long-time tube-feeding "pro," there should be a lot to talk about.


All this week we'll be looking at issues related to tube feedings and sharing ideas for ways to simplify life with a tube. We'll share resources, strategies, concerns...it's going to be a great week!

To launch the activities, you might want to see some of the precious faces of some amazing kids that thrive through tube feedings. Thanks to the brave kids and parents at the Babies and Kids with Feeding Tubes at BabyCenter.com for sharing their photos and the great moms and dads at feedingtubeawareness.com for putting them into a video!



Here are some resource links to check out this week:


General links


The Oley Foundation: a national not-for-profit organization of over 9,900 members that supports individuals and families with tube-feeding needs. They send out a great bi-monthly newsletter, hold annual conferences, organize a supply swap, match families with mentors, and other helpful things.


Feeding Tube Awareness: a site to provide emotional and practical support to families of children using feeding tubes.


New Visions: a fabulous resource by a fabulous oral motor therapist, this site has a wealth of information on tube feeding. Check out Suzanne's excellent articles!


Lists/Forums


Sometimes nothing helps as much as a personal contact. Find just what you need here:


Babies and Children with a Feeding Tube: this community at BabyCenter.com is a hopping place! There are some very friendly and helpful parents here.


Tube Feeding Listserve at Yahoo: this well-established group has been supporting families and professionals for nearly nine years. I pass it along as a resource that some of my friends have participated in; I have never been on this list.


Blenderized Diet Listserve at Yahoo: for those ready to venture into creating blended g-tube formulas, come join us here!


Blogs


You Start with a Tube: a marvelous blog written by an adult with a g-tube, a wealth of knowledge, and a side-splitting sense of humor




What resources would you recommend? Got a blog to share? If so, please comment below. At the end of the week, I'll post the collection for easy sharing.

2 comments:

Teresa said...

Just found your blog today. Wish I had known about it when you did the Feeding Tube Awareness week in February. My daughter has a G button and gets feedings at night only. She is failure to thrive and we are trying to get some weight on her. I'll be following your blog now...

Rose-Marie said...

Teresa, I'm so happy you found the blog! It's wonderful to have you here.

Is your daughter gaining weight with the nighttime feedings? We did them when our daughter (and her tummy!) was small and it helped her a lot with weight gain. She's grown out of them and it's really nice not to have to worry about tubes during sleep now...zzzzz.

Wishing you the best,
Rose-Marie