G-tube Resource RoundUp

Here you go! As promised, here is a list of resources to support families of kids with g-tubes. Of course, we could always use more! If you know of others, please add them in the comment section. I’ll keep the list updated so it’s easy for folks to bookmark them all in one spot. Thanks!!! I appreciate your help.
Rose-Marie

Organizations
The Oley Foundation (supports adult and child consumers)
A.S.P.E.N.  (professional support)
Feeding Tube Awareness (family support)
Listserves/Forums
            BabyCenter’s Babies and Children with Feeding Tubes forum            
            BlenderizedDiet.net forum            
            Yahoo Blenderized diet listserve           
            Yahoo Tube Feeding listserve
Blogs
            Adapting Creatively
            Ainsley Rae            
            You Start with a Tube
Clothing
            Tummy Tunnels            
            Special Clothes
Clothing Tutorials
            Grab-a-Scab at Adaptions 4 Kidz            
            G-tube Jammies            
            G-tube Clothing: Design            
            G-tube Clothing: Blank Canvas            
            G-tube Clothing: In-Seam Openings (to be posted soon)

Books and Informational Articles
            Homemade Blended Formula Handbook (Klein and Morris)
            Los Altos Feeding Clinic
            New Visions informational articles

10 comments:

TherExtras said...

Excellent list, Rose-Marie! This is a rare compilation.

Barbara

PsychMamma said...

What a great list! FYI: I also have a g-tube kiddo and occasionally blog about g-tube helpful hints. We use an Enteralite Infinity pump, but are transitioning to homemade blenderized feeds. I've blogged about our journey here:

http://psychmamma.wordpress.com

PsychMamma said...

Other blogs:

hollydgray.blogspot.com
thehopefulelephant.com
gavinowens.blogspot.com
eleanorbrogan.blogspot.com
http://pedalingbackwards.com/
http://adaptedworld.wordpress.com/
http://www.connorcharles.com/web/do/site?ID=7684

Rose-Marie said...

Wow, PsychMamma, thanks for the great list of blogs! I had a chance to look over some of the g-tube posts from your blog just now and they are very helpful. Thank you for sharing the link! Now I just need a quiet day and a HUGE cup of coffee to go through the others you shared...

Thanks Barbara! I hope this list is something useful you can share with your clients who eat by g-tube.

Isn't it such a blessing that we have a place called The Internet where people are excited to share what they know? I love seeing it used as a resource to support others...and it can be such a helpful and far-reaching tool for that!

jfrench2000 said...

I blog about my life which includes a child with a g-tube at http://heidi-french.blogspot.com There are several g-tube focused blog posts in Febraury 2011 for Feeding Tube Awareness Week.

Anonymous said...

One more resource for clothing... while not specifically "adaptive" these great cotton bodysuits ("onesies") come in might handy. Sizes 2T to 6T, at www.TodBods.com or www.EssentialWhites.com. Lots of great feedback on wearing them over a g-tube at http://www.essentialwhites.com/t-g_tube_care.aspx. (Thanks for letting us post this information!)

Rose-Marie said...

It's great to have this link for large onesies, Debra! The question about where to find them comes up often on parent lists I belong to. I hope folks will check out your site.

If people want to add g-tube openings to their onesies, there is a tutorial for that here:

http://adaptingcreatively.blogspot.com/2010/10/g-tube-jammies-tutorialand-giveaway.html

While the tutorial is written with one-piece sleepers in mind, the process for adding access to onesies is the same.

JER said...

Hello all! I am a Registered Dietitian for a company that has a division that sends RD's into the home to work with G-Tubes. Lincare Enteral. Please let me know if there is anything at all I can offer to help!

Anonymous said...

Here is an organization that makes stuffed animals with medical adaptations, such as g-tubes, oxygen, ng tubes etc. I think it is a great way to help a child come to terms with his/her medical needs etc. Share if you feel it is appropriate for your list.

http://www.tubiefriends.org/

Rose-Marie said...

Thanks so much for sharing this link, Anonymous! It's a great resource. You are right; play is such a great way for kids to feel comfortable with their own challenges and to explain their needs to others. I'm glad you shared!