(Ken) Re: An old timer needs a shoulder!

[Guest guest]

Hi, Ken!

Yes, it has been a very long time! I couldn't believe I was back on

the listserve with problems. Yes, is currently on Periactin and

GH. Just not seeing the results we had anticipated. There might be

something else going on so we are going to run some tests for that

soon.

I'm just freakin' out that he hasn't gained since around last May.

He's tried eating more, but with no results. Like I said, I'm not

afraid of using the g-tube again. I'm just afraid of another surgery

and the poor guy going through it all again.

Thanks for asking about and Tim. They are doing great. We

are just busy with life and worrying about right now.

By the way, I thought of you during the World Series (I'm sure you

were thrilled!!!) But as always..... " GO CARDINALS " !!!!!

Stacie

Mom to

> >

> >

> >

> > Hi, all! For those that remember me.... " hello again " . For the

> many

> > of you that are new, I was the third person to join this

listserve

> > waaay back when.

> >

> > My son, , is now 8 yrs. old as of 12/7 and was first

diagnosed

> at

> > birth. He has assemetry, former g-tuber, on GH and full of life!

> >

> > Anyway, after coming off the g-tube in April of 2003 his weight

> gain

> > has gone downhill. We have tried feeding therapy, nutrionists

> appts.

> > and just plain old BEGGING and tricking him to eat more. Anyway,

> he

> > has not gained weight since last May and at 34 lbs. and 43 inches

> > tall, the doctors are now concerned. My fear is having to go

back

> to

> > the g-tube. Not because I hated the g-tube or that it was a

> bother,

> > but just for the simple fact of having his little tummy go

through

> > another surgery.

> >

> > He will have a gut-dismotility test done very soon to see if

> > something is going on there.

> >

> > Anyway, I thought we were past the difficult part of RSS and felt

> > pretty educated on the subject, but find myself falling back to

> > stress, sadness, frustration, and terribly worried!!!!!!!!!!!!!!

I

> > look at my little guy and just want to cry out of pure mental

> > exhaustion.

> >

> > For those of you that are pray-ers or go to Church, could

sure

> > use your prayers. I appreciate this very much.

> >

> > I hope that your RSS situations are going well and pray for these

> > little ones all the time!

> >

> > Stacie

> > Mom to daughter, (non-RSS) and son, (RSS).