To

[Guest guest]

,

Whatever diagnosis is made, you will be so relieved to finally know

what is going on with . Just having a name to latch onto is

such a relief in itself. Then you will put your strength into

finding out as much as you can and into meeting others who are

affected with the same thing. If it's RSS, you are ahead of the

game 'cause you found us!

I remember the doctors telling us that Max had " a syndrome " and did

not know which one. It was very disconcerting and scary. We had

all sorts of images in our heads and it made us so worried. When

Dr. Yeboa, at Columbia Presbyterian in NYC, gave us the name, I

almost cried from relief.

Speaking of relief, you are correct: that g-tube will be a life and

sanity saver. We all have been afraid of it, the surgery, the task

of managing it, but we all have felt that it was worth it and not

nearly as big a deal as we thought it would be. I hope you find the

same.

There is another mom, Yadira, who has an 11 month old son who is

facing g-tube surgery in about a month. She will be here tomorrow

at a barbecue I am having for a few RSS families. I will tell her

about you and recommend that she contact you to discuss your fears

and concerns. You can support each other.

The original purpose of the barbecue was to meet with Jodie Cals and

Briggs to discuss our October Walkathon for Magic. And we

still will do that. But when Yadira joined the listserve and I

found out she lives where my father-in-law lives, just about half an

hour from here, I just HAD to invite her. She feels so lost and

scared, too. If you were near us, I'd invite you, too!

Jodi Z