Re: in NY

[Guest guest]

,

Water use to work for spasms, but now I find that nifedipine works instantly.

Ask you doctor about it.

Bobbie

[Guest guest]

You are really doing your homework. Great job Mom! At 7 months I

think Maddie would really benefit more from an Active type band

rather than a Passive type. We are finding out that the ortho is

modifying what would be an active band to a passive band for longer

wear. I hope Sue is able to give you the information you are

looking for. Keep us updated.

Dustie

> > Hi there!

> >

> > Colin's weekly adjustment was today and thank goodness his

awesome

> > orthotist was back (last week we had to see someone else). This

> past

> > week Colin's band had been slipping a little low towards his

eyes

> so

> > he added a piece of foam across the bottom back (near neck, I

> posted

> > a photo). This solved it beautifully. I need to check his skin

> > carefully as he reminded me that there will be additional

contact

> so

> > I should watch it for the next few days. It was fine after the

1

> hr+

> > ride home.

> >

> > I also posted some photos of the 4 sides of his helmet. I now

> > realize that one of his ear cutouts is a little bit big behind

one

> > ear but it hasn't been a problem IMHO.

> >

> > I added some clear backed stickers that I bought from Target

with

> > cute little boy sayings on them.

> >

> > That's it for now from us!

> >

> > Take care,

> > Sue

> > Colin F. 10 mos.

> > Starband 6/29

> > Buffalo, NY

[Guest guest]

Hi ,

So sorry I haven’t kept everyone up

to date on things. I’ve been so busy lately with the school semester

coming to an end (3 more weeks – woo hoo!), and my kids and work and

everything else.

Things are still status quo – no

major changes in regard to where I’m at with my condition.

I went ahead and emailed 7 of the most

well-known surgeons that I know of from this board and from my research.

Of the 7, 5 have gotten back to me

directly (Dr. Rice, Dr. Patti, Dr. H. Worth Boyce, Dr. Altorki and Dr. Haluck),

and of those 5, 1 actually called me himself – that was Dr. Rice from

TCC. I had pretty much figured he was too busy to deal with random emails since

I had gotten a read receipt to my email and no response. Then 2 days later he

called me at home at 10:30 pm.

Needless to say, I was floored that he called me. And very excited, because he

wants to see me.

He couldn’t promise me anything, but

offered some hope that the myotomy isn’t out of the question.

Of course, I am taking it with a grain of

salt because he hasn’t seen any of my tests or anything, which Dr. s

had when he recommended the esophagectomy.

On the flip side, I’ve already

gotten the worst case scenario, so nothing will surprise me anymore.

So I am just working to get my insurance

on board with this, since Dr. Rice isn’t in network for me. I need to get

my records sent to him and then go from there.

He was very nice and was very interested

in seeing me as soon as possible. I have already called his office after we

spoke and his secretary knew who I was, and she was very nice to speak with as

well.

I am really hoping to hear from Dr.

Luketich as well – I just got his read receipt today so I am keeping my

fingers crossed.

The other one I didn’t hear from was

Dr. Fuller, but from what everyone has said he doesn’t really do the

email thing. I haven’t had a chance to call his office yet though to

follow up (and possibly get him on the phone).

So basically, I have decided that I cannot

just go into this on one opinion. If I seek out other opinions and ultimately

they all agree, then I will be able to accept it and move forward with things. But

at least now I will know I saw more than one surgeon and I really explored the

options. So I am in a happy place again, and feeling hopeful without being too

optimistic. So we will see what happens.

Thank you so much for all your support on

this and for keeping me in your thoughts.

This is an amazing group of people and I

am so thankful that I found it.

Hope all is well with you too!

in NY

From: achalasia [mailto:achalasia ] On Behalf Of RICHARD

Sent: Tuesday, April 25, 2006 4:34 PM

achalasia

Subject: in NY

,

Good luck on the next leg of your " journey. " We are all behind

you 100% on what you are seeking, especially mixed up, but very well

intentioned ;-)

I know how difficult this is for you, feeling basically alright, but

knowing what may lie ahead if nothing is done. Having this done on

your terms.

Please let us know how you are doing whenever you are able to.

>

> Oops! I'm sorry, !

I've been guilty on the site before of

> referring to people by the wrong name and I guess I've done it

again.

> I hope the info helped you, , and maybe others, too, possibly

> even . Let me know if you have more questions. Good

luck!

>

>

[Guest guest]

Hey there….we did make it home fine,

although they don’t joke around about that “lake effect”

snow.

We are a bit too far east in NY to get it,

but it was like a blizzard on our way home Friday. But we did make it, and once

we were far enough east it stopped.

As for the information, I feel more

settled about things now than I have in a long time, even though I got such

different information than I have in the past.

I really feel good about it, and just the

fact that Dr. Rice made it clear what he thinks is best played such a big part

in that.

Basically we just need to get the testing

approved by insurance and get that taken care of, then go from there.

It was so great to meet you guys as well,

and is just great! How’s he doing now that he’s out of the

hospital? How is everything going down and what has he been eating? I’m

sure you guys are glad to be out of the Guest House. You’ll have to keep

me posted on how things go on Monday.

Take care and give my best!

Love,

in NY

From: achalasia [mailto:achalasia ] On Behalf Of toniasdogsandi

Sent: Saturday, November 04, 2006

5:55 PM

achalasia

Subject: in NY

Hey Girl-Just wanted to see if you all got back home

safely

I know you have alot of new information and your head must be

spinning. said to remember he will be happy to help you and give

you all the do and donts.lol He also has a few tips on how to get your

way with the nurses.lol WHATEVER!

We really enjoyed meeting you and your hubby.I hope we can do it again

for longer the next time.maybe after your all fixed up like and

then we can hit the buffetts!lol

You got my number so give me a call anytime! Talk to you soon,well be

going home late monday.

Tonia