July 16th - MAGIC Convention Update

[Guest guest]

OK. Convention Update effective Friday, July 16th

1. For those having Dr. Harbison visits on Tuesday or Wednesday,

the visits will be in " Room A " , NOT the Cumberland Room. It is

still in the general vicinity, and the hotel will have signs up

directing you (because it is their mistake that we have to move).

hurs/Fri/Sat visits will still be in Cumberland.

2. We are emailing all of you " new " families later today with more

detailed info, but ORGANIZATION will be key for your Dr. H visit for

all of us. A timer will be set both in your visit and outside at

the checkin table. We will be absolutely strict. Dr. Harbison has

requested this because a) she is working 13 hour days with no

breaks; and because Mount Sinai is also like this, and for those

of you who know her, her visits have run 2 hours sometimes.....

well, no longer at Mount Sinai. So she has to get more efficient,

and in turn, we have to ask parents to be more efficient.

If you are current New York patient of Dr. H's and you are seeing

her at the convention, your visit is different -- but still make a

priority list of questions.

For those who are seeing her at the convention for a return trip,

make sure to bring a cover sheet with bullet points of medical

updates -- new meds, new growth, etc. And list your questions in

priority order. Plan on getting 2-3 questions answered, so pinpoint

what your most important questions are. The time will go by fast!

3. We need 4 volunteers that can donate 30 minutes of time each,

between about 12:30 - 2:30pm on Saturday at the pool party. The

lunch was originally going to be " pay your own " but we got Pfizer to

pay for it. However, I have asked that it be a sandwich bar with

chips, soda, etc. -- the problem is that we won't have enough food

if families load up on food to take back to their rooms.... so we

are going to have to have someone standing there with a clipboard,

mark off family's names, and you can go through only once.....

Please email me at magicrss@ mindspring.com if you can donate 30

minutes of time (no children with you obviously).

Thank you!!! Salem and Katy Frissora

[Guest guest]

<<Plan on getting 2-3 questions answered, so pinpoint

what your most important questions are.>>

What are 3 good questions to ask??

I have as of now..

1) Is he RSS or SGA? Why?

2) What can I do about his lack of eating? Periactin or

Peptamin Jr (or both)?

Can anyone help me think of another that may be important, but I am forgeting?

Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

and Jed (11 years old) Tourettes, CAPD,SVT.

SW Orlando FL

**Push for Bush 'cause Kerry is scary**

[Guest guest]

-

what about these-

have you thought of the possiblity of using gh? or does he have any

reflux issuses that need to be addressed?

jodie

In RSS-Support , <mommy2twoboyz@b...> wrote:

> <<Plan on getting 2-3 questions answered, so pinpoint

> what your most important questions are.>>

>

> What are 3 good questions to ask??

>

> I have as of now..

>

> 1) Is he RSS or SGA? Why?

> 2) What can I do about his lack of eating? Periactin or

>

> Peptamin Jr (or both)?

>

> Can anyone help me think of another that may be important, but I

am forgeting?

>

> Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

> SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

> and Jed (11 years old) Tourettes, CAPD,SVT.

> SW Orlando FL

> **Push for Bush 'cause Kerry is scary**

>

>

>

>

>

>

>

>

>

[Guest guest]

He started GH in May and his reflux in under control for the most part....

thanks for the suggestion's...

Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

and Jed (11 years old) Tourettes, CAPD,SVT.

SW Orlando FL

**Push for Bush 'cause Kerry is scary**