Hi Maria,

I feel the same way you do. I want to let Zack grow at his own
pace. Zack will be 2 years old on 8/25, he is 14 lbs, 5 ozs and is
27 1/4 inches in length. He does not have a feeding tube yet the GI
doc is pushing it. All Zack's other docs are fine with his weight
and length. You are not a bad mother. You know your child better
than anyone. If you are not comfortable with it then don't do it -
go with your gut. Dont let anyone make you feel guilty. At least
for us, we are consumed with his daily calorie consumption and that
is not an easy task. Personally, for Zack, I am not convinced that
tube feeding will help him. He can only tolerate so much quality
and quantity in his little stomach before it comes right back up.
If your other docs are happy with his growth then go with their
opinions.

Zack is my "little peanut". I love him more than words can say. He
is much smaller that my 4 1/2 year old but who cares. Size isn't
everything. He has a sweet and funny personality and he has taught
me so much about life and love in these two years.

With Zack's diagnosis, the preliminary results came back negative
but it was the gene sequencing that came back positive almost 6
months after the original negative.

It is nice to have others to talk to that are familiar with NS and
can help or just lend an ear or be a sounding board for
anger/happiness/problems.

Anytime you want to talk feel free to email personally.

Beth

--- In noonan_support@yahoogroups.com, "maria" <artononyx@y...>
wrote:
> First let me say that I am glad to have people to talk to about
this.
>
> I belong to a few preemie groups. I had one person berate me
cause I
> don't want to go to the GI. (I think they take some offense since
> their child has a tube) He said I should do what's best for Logan
not
> what is easiest for me. I also told him I would rather look at
HGH if
> needed rather than a tube. He said HGH is more invasive. (huh???
you
> don't cut open a body for HGH)
>
> Logan is gaining. He was 3# 9 oz at birth and dropped below 3#
before
> he began to gain. He now at 13/10 adjusted months is over 12# 8
oz.
> He did have a set back in weight gain when he got thrown out of
whack
> when we were packing and moved and almost completely stopped
eating
> his baby food. He seems like he is getting back on track with
weight
> gain. The ped is happy with his growth. Also the ped has said
(as
> well as all the research I have done regarding pulmonic stenosis)
that
> his heart condition can really impact his growth. The ped told me
> that unless he starts to really fall off of HIS curve; we should
wait
> until he is bigger to repair his heart.
>
> So my question(s) about this is...
> Am I wrong to want to wait and see how he grows?
> Am I a bad mom (as this person I mentioned above made me feel)
cause I
> don't want a tube?
> What about HGH? Has anyone gone either the route of tube and then
> HGH? Or has anyone opted for HGH instead of the tube?
> How many of you just let your kids grow at their own pace and love
> them for who and what they are? (that is what I want to do... I
love
> Logan as is... I am small; my family is small .. why would I love
him
> less if he is small?)
> How do I get over wanting to grab Logan; pack our things; and just
> leave ... go where noone knows us and just raise him and love
him???
> One last one ... has anyone ever had the DX reversed somewhere
down
> the line?
>
> Please help me with this.
> Maria