Saturday, February 27, 2010

Update Update Update......


So ... Nathan has been pretty sick, so has Kaedyn ... some odd little virus effecting them both a little differently.  They are better now though - yay!  But that picture was my poor baby yesterday. 

Noah had an appointment with Dermo this week, to look at that blasted birthmark of him.  He assures me it's "completely normal" and when I asked him if he was sure it didn't have anything to do with his MT16 - I got the blank stare...   "his what?" ..... seriously, tell me Dr's do read records? LOL ... so I had to go through his MT16 for the DR who was clueless about it.  He said "that's interesting, I'll have to look into that."   We do know that that his MT16 is in his skin, for sure.  It's not in his blood at all.  It was 100% in the placenta (that rotten thing that managed to sorta do it's job) ...  that's all we know.  I was told that if the skin growths on it continue to grow the way it does and it becomes bothersome (where he hits it when he's combing his hair) then they can do something to "flatten it out" .. yeah, that will go over REAL well. 

Nathan is doing well, the more and more that I research RSS (Russell Silver Syndrome)  .. the more I am sure he has it.  My mom says "if it looks like a duck, and quacks like a duck, it's a duck."  I looked at Nathan who was all curled up in his Pooh chair playing his brother's DS ... and said "Nathan, Nana just called you a DUCK!"  He wasn't amused.  I was half expecting him to quake ... lol.. 

Anyway, we joined the Magic Foundation and go this awesome book ...
I wasn't expecting a 300 + page textbook type thing.... it's wonderful though, you read it and you can understand it, there are personal stories in there...  and I have 2 kids that fit that bill ...  Nathan with RSS (or at least SGA) and Noah with SGA.   Apparently there is one more genetic test they can run to check for RSS in Nathan for a definitive answer.   It'll be run next week.  Not sure when we'll hear the results, may not be until April sometime though. 

We're going to try to make it to the convention this summer.  Only I'm torn, I'd really like to attend both the Magic Foundation one and the S.O.F.T. one...   and I have to come up with fund raising ideas. 

Anyway - it's late and I need to get to bed. 

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!