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Monday, March 8, 2010

25 Million+, It is time to care about rare disease

I wanted to see if I could get your quick help. Change.org recently launched the 2010 Ideas for Change in America competition.One idea is titled: 25 Million+, It is time to care about rare disease.. I thought you might be interested in getting involved and recommend you check it out.

You can read more and vote for the idea by clicking the following link:http://www.change.org/ideas/view/25_million_it_is_time_to_care_about_rare_disease

The top 10 voted ideas will be presented at an event in Washington, DC to relevant members of the Obama Administration, and then promoted to Change.org's full community of more than 1 million people. So we could have a real impact.

Thanks for the help!

Wednesday, March 3, 2010

The Liberty Bell


It sure is a good thing that we have Zoe - this past week she was given a 1st grade social studies project to work on. It helped me to keep my mind off our wait :)


Her Living Museum project was the Liberty Bell.


Today at school she presented her project in front of he classmates and all their parents. I have to say, both Doug and I were rather impressed by her public speaking ability - she spoke loud and clear and needed no help (this wasn't the case with most of the kids in her classroom)


I just wanted to share a picture of her as The Liberty Bell.

Tuesday, March 2, 2010

Time Going By

The time is passing quicker (at least for the moment) then I thought it would.
Only 4 - 6 more weeks left......as I keep saying let's keep our fingers crossed it won't be longer. I have met some families who had to wait 16 weeks - these mom's and dad's must have the patience of a saint.

Family Updates:

Zoe is doing really well. She has been healthy and no issues in a while with her. Spring break and her BIG #7 birthday are almost here. 7 going on 17....she can't make up her mind of what she wants to do for her birthday.

Doug is having his moments. I think all the waiting and worrying is really taking a toll on him.

Me pretty much the same as Doug.

Zachary......this kid is an AMAZING little kid. He has his bad days (more often then not lately). Yesterday we got the good news he may graduate from ST soon. That has been a long time in coming but with the good news there seems to always be bad to follow.....His SM is awful and out of control - to the point of not talking to therapists he's had for years now. There is also a new concern from the SLP about the possibility of Auditory Processing Disorder http://en.wikipedia.org/wiki/Auditory_processing_disorder
Hopefully this will not hinder his graduating from ST - we will see in the coming months.