Archives for February 2009

I need your help.  Yes, you.   Whether you are a regular visitor or just happened to visit my site for the first time, I need you.

I’m on a mission to find and compile all blogs and up-to-date websites of children with rare diseases (or adults who were diagnosed as children).  There are over 6000 rare diseases affecting children in the world, and I can’t do this by myself.  I’ve been looking, and I’ve only found less than a dozen blogs (see my special kids links on my sidebar), and I know there are more parents like me out there.  

Basically, I want to create a directory/blogroll (or whatever you want to call it) that links all these special children together to be unveiled on February 28th, the 2nd annual World Rare Disease Day.   You can either leave them in the comments below or send me an email. 

If you have a blog, please post this request and help me out.   You can even have your visitors email/post the links on your site and you can email them to me. I’m not looking for more traffic with this project.

And if you use StumbleUpon, Digg, Facebook, etc. please click below to share this request!

During the past week, Hannah is starting to master the ability to roll from her tummy-time position to her back!!  We are so proud 🙂  Tummy time has also become a bit easier on her, as she can last at least 5 minutes (sometimes a bit more) on her stomach. 

As for turning from back to front, she can definitely lean to the side she wants to roll over to.  Unfortunately, her huge abdomen (because of her enlarged spleen and liver) kind of acts like an anchor, so she can’t get the push to make that final roll over. 

But she loves standing up.  All I have to do is to hold her by the hips to steady her, and she will stand there for over a minute.  She loves it!  When her knees give out, she quickly tries to get back up in a standing position.  It is so cute because she acts like a little crane overlooking the world — she looks at everything from the view up there.  (I should get a video of that!)