Lost in translation

For all of our readers abroad I wanted to direct you to the Translation Tab in the right sidebar. I have added a feature that allows you to translate each post into a variety of languages. I can't really speak to the accuracy of it but hopefully it will help RS families who speak other languages gather information!

RS Forum

I wanted to get a new (to me) link out there. A couple of the RS families have worked very hard to create a forum space for information about RS. This will provide a place to see archived topics, papers, research, etc. You will definitely want to check it out. (You can click below to be directed to the url.)

RS FORUM

Guest Bloggers?

I mentioned this a few posts back but I wanted to repost it here. If anyone would like to share a story, introduce their RS child or write a blog post let me know. If you don't love writing I would be happy to help compose the post. It might be helpful for other RS families to read about different kids with RS other than just Abby.

If you want to write or submit something just submit a comment or send me an e-mail!

Blogging

I began this blog on May 28th of 2009. I started it because I found that I spent so much time talking about Abby's issues on my main blog (Life with Coco and Gigi) that I lost a little focus on all the other things going on in our life. Her diagnosis was very fresh and I had so much to say about it. In the time since I started blogging about her condition I have found more parents of RS kids than I ever imagines. Just this week I met a new friend. Her son has RS. Up until this week she was unaware that any other RS kids were out there to share info with.

This brings me to my point... I am amazed at how much this blog has opened doors for our family. How many other families we have "met" through a simple blog. I had hoped at the beginning that I might be able to share some information and hopefully find other people who are dealing with RS as well.

Now a couple of years later and we are hoping to found some sort of formal group or organization for families living with RS. When Abby first got her diagnosis in 2009 we were led to believe that her diagnosis was extremely rare. While it is rare there are plenty of people living with RS (and by plenty it in a very loose sense) to communicate, share and vent with. These are the moments when I am thankful for the internet and the simple act of blogging.

So for any readers who have not e-mailed yet feel free to do so. Get your story out there. And for any reader who want to share their story feel free to contact me about guest posting.

Comments

Sorry if you have been unable to post comments. I think I have it fixed. :D I would love to hear from those of you who are reading.

Forum has changed

If anyone who reads this blog has been a part of the RS forum on Rooms of Jade you have probably been getting an error message when you try to log in. That is because the forum has moved. You can access it HERE and you will need to sign up again. The forum is great and you can now use signatures and more features. Hope you find your way over there!