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Remember a few weeks ago when I was whining about not feeling like we fit in anywhere? Well, it wasn't long after that when I decided to google something about GJ tubes and ended up coming across a blog about an adorable little girl named Allie whose medical history is a lot like Raya's. After I said a little prayer to apologize for being whiny, I emailed Allie's mom. I told her a little bit about Raya and mostly just told her how excited I was to finally come across somebody whose symptoms were similar to Raya's. Allie's family hasn't really gotten much farther than we have in their quest for an explanation, but it was just so wonderful to find someone who knows what this experience is like.
Allie's blog had a link to a website called Feeding Tube Awareness. Since then, I have spent hours reading everything on that website. They have a facebook page where I have finally been able to connect with people of all different backgrounds who are either caring for someone with a feeding tube or have a feeding tube themselves. It has been SOOOOOOOO wonderful!! Anytime someone has a problem with something or needs suggestions on how to handle things, all they have to do is ask on the facebook page and anyone who has an answer can share what they know & what has worked for them. I have already learned a few little tricks and have had people email me to ask me about things we do with Raya. Not only that, but seeing the struggles that other people go through with their "tubies" reminds us once again how lucky blessed we have been at how smoothly things have gone with Raya. Some of these people are facing incredibly difficult decisions with their children and it's so nice to have a forum where there is such a great support system. It is EXACTLY what I had been praying for. For anyone out there who has a feeding tube, has a child with a feeding tube, or is trying to make decisions about whether or not to get one/what kind to get, I would STRONGLY suggest checking out http://www.feedingtubeawareness.com/ and the FTA facebook page. These wonderful people are a wealth of knowledge. It will be more helpful than you can imagine and you can thank me later. :)

Comments

  1. I'm so happy that you have found a place where you can get/give information and feel a part of things--people who REALLY understand what you've been going through and living with!

    ReplyDelete
  2. Facebook is either the devil or the most awesome social networking/connectivity device out there. I felt helplessly lost when trying to find heart message boards. I could find blogs until I was blue in the face, but it wasn't what I was looking for. Then on a blog one day someone had a link to a Facebook page. VOILA! Eight months later I've become a member of no less than four pages that do exactly for me what they're doing for you. Although it does get a little overwhelming trying to keep up with them all, but SO NICE to be able to just ask and recieve answers/advice. Yay for you finding your resource.

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