(almost) new here

[Guest guest]

I've been following this site for some time but this is my first

post. I'll start off by saying how much I have appreciated

everyone's compassion, wisdom, and openess on this site! It

has made a huge difference to me.

My beautiful daughter Mila was born on April 17/01 at 37 weeks

weighing 4lbs 13oz. After one year of struggling with weight

gain, reflux, doctors telling us nothing was wrong, and 'helpful'

people stating that " all babies eat " , she was diagnosed with

RSS and UPD7.

She is now almost three, 78 cm 18.5lbs and is amazing. She

laughs deep belly laughs, has an opinion about everything and

lights up a room. Aside from having to encourage her to eat and

being obviously small she is a regular child. Time now goes by

when I don't think about RSS - something I never thought would

happen during our first year.

We live in Canada and although we've had good medical care

have decided to travel to England to see Dr. Stanhope for a

consultation. Our appointment is on April 6!

I was wondering if...

- any other children (or adults)on this site have UPD7 as well?

- anyone knows of any reasonably priced accomodation near

Great Ormond St. Hospital?

- anything we should know/ prepare or tips for our appointment?

Thanks so much,

Jana (mom to Mila rss, 2yrs 11months)

[Guest guest]

Jana,

If you don't mind, why are you going to England instead of New

York? Do you have family there or are you going to make it a

vacation, too? No matter - Dr. Stanhope is a great person and

physician. He spoke at last year's MAGIC convention and is

scheduled to speak again this year. (He really likes his beers!!!)

Mila sounds like a great child. She seems to have the RSS

personality. They all seem to light up a room and know how to work

it, too.

Good luck with your trip. Please let us know what Dr. Stanhope says.

Jodi Z.

[Guest guest]

Hello Jodi,

Thanks for your reply. Yes, we are going to see Dr. Stanhope

because of family and holidays (yeah). My sister is getting

married in Wales and so we are already flying into London. We

live in Vancouver so it just makes sense for us to combine the

two rather than also buy plane tickets to NY.

I'm curious about whether there are any advantages to seeing

Dr.H instead of Dr.Stanhope? Any thoughts?

Thanks,

Jana

> Jana,

>

> If you don't mind, why are you going to England instead of New

> York? Do you have family there or are you going to make it a

> vacation, too? No matter - Dr. Stanhope is a great person and

> physician. He spoke at last year's MAGIC convention and is

> scheduled to speak again this year. (He really likes his

beers!!!)

>

> Mila sounds like a great child. She seems to have the RSS

> personality. They all seem to light up a room and know how to

work

> it, too.

>

> Good luck with your trip. Please let us know what Dr. Stanhope

says.

>

> Jodi Z.

[Guest guest]

Jana,

No, there are no advantages in seeing Dr. H. over Dr. Stanhope. They

both have basically the same approach to treating RSS. The only

advantage for us is that she is in NYC, much closer than England.

What are you going to do if Dr. Stanhope wants to see you every three

months?

By the way, as a side note, I was supposed to be named Jana, but my

father, who my mom divorced when I was two, insisted on Jodi. I have

always wished that my mom had won the argument and I was called

Jana. I LOVE that name. I sort of made up for it by my husband and

I naming our daughter Jenna.

Jodi Z.