It's amazing, the learning curve with all of this is so big...even though we knew there would be health issues for our son when I was only 4 mo. pregnant...well, how could anyone really know what to expect?  Especially with a healthy child already?  Anyways, I don't know if I mentioned before that our son, Henry, has yet to be diagnosed.  That said, I have done some research and although he seems to fit in the Noonan's catagory best...the specialist's don't agree.  The testing on it is so vague and inaccurate that I don't know why they bother (30-40% accurate on the positive even showing up?), but, we see a new specialist in a few weeks...we'll see.  From what I've found, the Noonan's group of families doesn't seem to be as vocal and present as other groups...If you live in a larger city of course your chances of meeting up with someone would be greater.  However, you may want to also explore groups that focus on heart issues, feeding issues, other sides of the big picture that might actually be an easier way of getting your partner into all this.  My husband and I ended up going to a therapist for a few weeks...I think both of us had so much sadness and some confusing anger as well...and who can you blame when things don't go how you hope they will?  Especially when nobody seems to even know what to tell you about how things will progress?  Please do let me know if you have very basic, specific and/or misc. questions about any of this...I feel like I've learned more in this year alone than in my past 35!  As far as your partner accepting this...or not...I think we women tend to talk and talk and talk about things in order to process them...whereas men are more prone to think in solitude.  Amazing we are able to work through things together at all!!!  Only joking.  Kind of.  I hope you have a strong family and/or friend support group.  Please feel free to write whenever.  I don't write on line that much these days, but if I can be of any help whatsoever, do let me know.  We live in Portland, Or.  Have a good night...sleep well.  -Madeline

lozzar8 <lozzar8@...> wrote:

thankyou it is a great help i can at least try to get the ball
rolling.i feel so alone with all of this.my doctor and health visitor
had never heard of it and i have had to print off information for
them.my partner is in denial.he will not except anything is wrong.it
took months of me begging my doctor to refer him.his cardiologist said
he didnt have it.but mothers instinct told me something was wrong from
the start.i am on maternity leave with my third child at the moment but
should be returning to work soon.i dont want to.i dont feel that i can
leave him now it has been confirmed.i hated leaving him before.i have
heard of familys with noonans meet up at different events if you know
of any soon that would be great if you could let me know.i hope your
son is doing well.thanks again

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