Madeline:

Thank you for the positive feedback, as it has been overwhelming,
even though I knew my son might have a genetic syndrome prior to
birth. He is my first child, so normal new mom fears have been
intensified. I will try not to fret about his head and will seek
out intervention services just in case...as it can never hurt for
him to have as much support as is available. It is nice to learn
that we may find peace in the coming year and learn to take it easy.
I hope all continues to go well with your son.

--- In noonan_support@yahoogroups.com, Madeline mckee
<mckeefamily1@y...> wrote:
> Hello, sounds like your baby is at a healthy weight and
length...that is great! If I could give any advice, I'd say not to
worry about the current shape or size of his head...all that changes
so much over the next few months, you might look back and say, 'wow,
remember how we worried about that?!'. Of course the recent
diagnosis is most likely overwhelming...I'm sure you've spent lot's
of time on the computer lately, sounds like your son has a really
great starting point! I'm sure your doctor has told you that there
is a large variance of symptoms and their degree of
seriousness...sounds like your son might be mildly affected? Our
son is still undiagnosed...but from what I've learned, I believe he
has Noonan's. We started with Early Intervention Services at 5-6mo.
old. He has an O.T. who comes to our home 1x per week. She is
wonderful and helps us with certain low-muscle tone issues. When
our baby was little (he is now 1), I was soooo worried all the
time...we also have a
> healthy 5 1/2 year old girl...but now I seem to have fallen into
a rhythm with him and treat him as I did our daughter...not fretting
over every little thing. Sorry to go on so long, I just remember
how overwhelmed and suddenly alone I felt when things were so
different than anyone I knew. Hope this helps? Best wishes,
Madeline
>
> jskione <jskione@y...> wrote: My son was diagnosed with Noonan's
yesterday. He is three months
> old (11 pounds, 22.5 inches, head circumerference of 39.3 cent) He
> passed hearing, eye, and skeletal tests with no anamolies noted.
> Still, our geneticist says our son is an open book. So far, he
> seems to be meeting milestones.
>
> My concern is the appearance of his head. It seems very small to
> me, although the doctors assure me he is not microcephalic and
that
> its appearance is likely a result of the cystic hygroma that
> resolved in utero. Can anyone give me insight into how the
> appearance of noonan babies changes over time? Will his head get
> bigger? His face seems to be in the lower half of his head. Will
> it grow? His ears are low set, but the doctor says they are
within
> normal range. They are small and flat to his skull right now.
>
> Also, any insight anyone can offer regarding how my husband and I
> should proceed with our son would be helpful. He is going to go
> through a battery of tests (endocrine, hematology, and cardiac) to
> make sure he is okay. What else should we look for? How soon
> should we start with a developmental pediatrician?
>
> Any insights would be greatly appreciated.
>
> By the way, we know our son has a missence on protein 308 of the
> ptpn11 gene.
>
>
>
>
>
>
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