Thursday, February 5, 2009
The Wide Wide World of Blogging
Well in all 23 years that we have had Leah I have not taken the opportunity to explore the internet for information about Rubinstein Taybi Syndrome. There lots of info out there on the vast internet highway. I've been checking out these blogs by families with children that have RTS (that's the cool way to refer to the syndrome). I'll eventually be up on all the latest jargon but it's been enjoyable checking out these blogs. Seems that Leah has a fairly severe case but I seem to remember one of the geneticists saying he had never seen or heard of any one person with as many symptoms as Leah had. I guess we hit the jackpot. Ha. If you have the time or the interest check out some of these webpages and blogs. http://www.rubinstein-taybi.org/our_pages.html
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2 comments:
Hello Louise,
You left a comment on my blog last week and I just had to check your blog out. You are a busy lady. It looks like you have a lot of grandchildren, engagements, and weddings happening in your life. I'm glad to hear that Leah is out of the hospital. I'm interested in learning more about your journey with her. If you have the time please drop me an email mrs.olives@yahoo.com.
Hi Lousie, I recently found your blog. You have an amazing family. It looks like you guys have alot of fun!! My son, William is 2.5 years old and was diagnosed with RTS when he was 9 days old. Leah is beautiful! I am glad that she is out of the hospital. Will also has a feeding tube, he got it when he was about a year old. I am curious to know how long Leah has had her tube. Will has alot of trouble swallowing food. I am looking forward to learning more about your family and Leah!
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