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. 

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