Many girls with Rett Syndrome need to be tube fed either exclusively or as a supplement for various reasons including aspiration and failure to thrive. The decision to have a feeding tube placed is a very difficult one for parents to make. There are so many emotions involved.
After coming home post-op, all a parent wants to do is make their girl comfortable and get her back to a normal routine. But it's the little things that seem to be the biggest obstacles. Things like shirts fitting too snugly around the new button and PJ's covering up the button making it hard to connect to the pump at night.
Our fantastic Rett families have done a lot of searching and have found some great resources for you and your tube-fed Rett girl. I personally like the comfy pads that fit around the stoma at Making Lemonade. There are also cute, soft covers for buttons at Belly Buttons and Belts. And easy ways to adapt clothing and PJ's at Tummy Tunnels.
Check out all these great ideas and more at Rett Girl.
If you are a parent facing a decision to tube feed and wanting support from parents who have been there, contact us! We are always here to support you!