Sunday, January 22, 2017

Sunday, January 22, 2017

Tonight's picture was taken in January of 2009. I remember this day distinctly! Mattie had to endure a VERY long bone scan. He had to fast from the night before and by mid-day the next day, I thought Mattie was going to lose it. What kept him motivated was Linda (his child life specialist, you see here) promised him that he could go out to a special lunch with all of us, if he managed through the scan. On the hospital campus is a restaurant that has a section with tatami tables that will grill food right in front of you. That sounded very good to Mattie and as you can see he had a good time and actually ate up a storm! Mattie loved shrimp, which is why I used to call him my "shrimp man," and he ate plenty of it at that lunch. 

But it wasn't an easy morning for scans. What should have only taken a hour, landed up taking about four! I was getting very anxious and worried because the tech kept taking and re-taking images. So finally Linda tracked down the radiologist in charge and I got to speak to him. The reason he kept ordering more scans was because he thought Mattie's cancer had spread. As it turned out fortunately we consulted with each other, because he needed extra information about Mattie's prosthetics to realize that it wasn't cancer but scar tissue from the prosthetics. Which is another great example of what parents must be part of the treatment team at all times. 


Quote of the day: Don’t ask yourself what the world needs; ask yourself what makes you come alive. And then go and do that. Because what the world needs is people who are alive. ~ Howard Thurman

This is the sight I woke up to this morning! Sunny has a way of waking us both up and taking over more than a 1/3 of the bed.  

I am happy to finally report that our Roundtable program book is done and printed for attendees. I have been working on this book for WEEKS! It is 22 pages long, but here are what a few of the pages look like.

On this page, I give a visual history of the Psychosocial Standards project from 2012 to present. It is amazing to think that in 2012 we organized a Psychosocial Symposium on Capitol Hill in which we charged the research community to develop evidence based standards of care. From that symposium, we then held two think tanks (in Huntington Beach, CA and Tampa, FL), had monthly phone calls, had outside reviewers and reviewed close to 1,300 articles to develop the 15 standards of care. By the time it was all said and done, over 80 health care providers from the US, Canada, and the Netherlands took part in this historic project. 

On this page, I provide an overview of the project's Timeline, that details some of the methodology for creating the Standards.  

This page details all the Standards. Mind you if you should want to read the history of this process and look at the Standards, you just have to go to Mattie Miracle's webpage: www.mattiemiracle.com/standards. Mattie Miracle paid for OPEN ACCESS to these standards, which means that you do not need to be a member of the journal's association to access them. 

This page lists the ten professional organizations that have endorsed the Standards to date. 

While working this evening, I have my buddy with me. He is never far. He is my constant companion and he loves to spend time in Mattie's room. As you can see he has taken over Mattie's bed!