Sunday, February 7, 2010

Featured in Kidz! Plus RSS discussion

.

First of all, Noah and Nathan were both featured in the KIDZ blog!  Noah was last month, and Nathan was just a few days ago!  (Click their linked names to see the entries)  Noah's was copied from the DOC16 Site, and Nathan's was the Pity entry I did a few weeks ago.  It's amazing, to me, when their stories are shared.  I feel that these two boys, and so many others, show so much hope and strength.  Life isn't always what it's pictured to be, or even how we always want it.  Things don't come to us in timely fashion a lot, and we have to work at it... but, just because sometimes things are thrown at you, without understanding why, doesn't mean they are any less special!

Upon Nathan being featured in the KIDZ blog, there was a note left.  She had said, in it, that before she even read the whole story, she thought that Nathan looked like an RSS kid.  See, she is an RSS adult.  So it struck a cord with me.  What AM I waiting for?  I have been dancing around joining RSS sites because we didn't have the definite diagnosis.  So I just hadn't.  Now, I realized, I needed to.  So I joined the yahoo group she suggested, and I joined one on Facebook long ago, however I had never posted in it before, so I did now.  I even managed to find a growth chart (length) with an RSS curve on it off the Magic Foundation website, so after having Dennis print off Nathan's growth chart (accessible by our clinic website) ... I sat there and was putting his heights in .... and it amazes me how close to "average" he is for RSS!  He almost follows the curve ... 

We were considering going to the Little People of America's Convention this year, it's in Nashville, but then I read about the Magic Foundation Convention.  They have it every year in Illinois.  And I think this is something we need to go to because one of the specific disorders that they deal with is RSS.  So we hope to go to the Children's Convention.  We went to one with Noah when he was 2 and I have to say it was something that we'll never forget!  It was a wonderful learning experience for us, and an opportunity for us to network with other parents going through the same thing, not to mention - meeting up with other DOC16 families. Anyway, I have noticed that Nathan is starting to notice the growing size difference between him and his little brother (who is now bigger then him) ...  and I think it's bothering him.  So I think this would be a wonderful importunity for not only Nathan, but our whole family!

No comments: