Wow, where to start? lol

[Guest guest]

Hi again folks,

We really appreciate all the support. I'm at work so I'll try & be

brief here and we'll write in more detail later. Debby, I met Nikki

in chat yesterday and she mentioned her fellow Canuck ) Thanks for

your warm welcome, and also to , Jody and Nikki (Hope I

didn't miss anyone).

In reading the posts, both early and recent, we'd noted Dr. H's name

coming up frequently. We were excited to see that she's in Manhattan,

since we live in Westchester, NY, just north of the Bronx (NYC). We

have an appointment with the specialist who made this diagnosis in

about two weeks, but we'd imagine he's going to refer us to her.

When we were first advised to have tested to see why he's so

small, Judith did some surfing and all roads seemed to lead to the

Magic Foundation. She remembered seeing the link to RSS after we got

the diagnosis, so that's where our basic info came from (not the

doctors, heaven forbid they'd tell us anything!). We had already

printed the membership form and I believe it was mailed yesterday.

Judith and I have been attacking the posts from both ends - reading

the new daily notes as well as going back to when this list was

started. Yes, it's time consuming and we do understand that some of

the info from even two years ago is probably outdated, but we've also

found it fascinating on several levels. There are some absolute

advice gems that, even though they may not be applicable to us yet,

are valuable chestnuts to put away for a later date.

But there's another fascinating thing we've found. We're getting to

live with some of you folks, watch the kids `grow up,' so to speak,

and in a relatively short period of time (Judith already can put most

of the kids with the parents' names lol). It's incredible to see how

far some have come (Joe and immediately come to mind), and I

think that sharing the successes and the setbacks through the

archives is becoming a remarkable experience, as well as providing a

sense of perspective. I don't know, maybe that's just me…

Anyway, so much for brevity lol. Just to wrap up, Debby, I can't

tell you how much we appreciate the time, thought and heart you put

into your welcome, especially when you're going through so much

yourself. I was answering so much of it out loud that we really want

to reply in more depth later.

One more thing I had to comment on, your feeling that God gives these

kids amazing personalities to get them through what they're going to

face. I made that exact comment to my mother this weekend. is

easily the most charismatic kid I've ever seen (I'm the oldest of 5),

not to mention being a shameless flirt, and I'm not exaggerating to

say that his wonderful nature, after everything they put him through

at the hospital, was what got me through the weekend. Just laying on

the floor and giggling with him is an experience words can't

describe, now moreso than ever.

Thank you all again,

Steve ( & Judith) – Westchester, NY - parents of , RSS, 13

months, 10 lbs 13 ozs, 25 ½ inches and , 19+ lbs, who needs to

stop treating her twin brother like a speed bump )