Re: wetsuits and Willie update

[Guest guest]

Hi and everyone,

Dr Harbison recommended that I email you,, for the info on the

custom wetsuits for Willie. Would you send it to me when you can? Thank you!

Also, a few of you had asked that I let you know how our appt w/Dr Harbison

went.(thanks for caring:) Just before we left for NY our GI dr had scheduled

a gtube insertion and things were not going too well. Dr Harbison has changed

all that for us. She is absolutely amazing. She told Willie that his mother

cannot eat for him, that he has to work harder and ,without threatening,

somehow let him know that it's up to him to eat enough to stay off a gtube.

This transfer of responsibility from me to Willie has been nothing short of a

metamorphosis for us both. He is eating and really, really trying. At 4 and a

half, he's asking calorie counts and if he should maybe have some protein.

Experience tells me not to feel like we are out of the woods, but ,boy, what an

incredible relief. I didn't know just how on edge I was. So, for now, no

tube, just changes in some meds, timing, etc. She is so on it with these kids.

Thanks for listening again!

Kathy (Jack, 6, non-RSS and Willie, 4, RSS< Periactin, Genotropin, Zantac,25

lbs, 92 cm)

[Guest guest]

>

> Hey Kathy,

Glad to hear things are going a little better!

I was wondering, since Willie and n are about the same size, how

many calories a day does he need to keep up with the GH?

How are the shots going?

Cindy

>

[Guest guest]

Your news about Willie is incredibly refreshing, positive and

hopeful. Congratulations on a successful appointment with Dr.

Harbison. I have not had the privilege of meeting with her yet

myself (we have our 1st appt in Oct) but, I have to agree that she

is right on with the kids - thus our decision for going - and it

always makes me incredibly content to hear how she is helping each

and every one of us.

Sounds like you have an intelligent little boy on your hands!

Our best to you.

- H

> Hi and everyone,

>

> Dr Harbison recommended that I email you,, for the info on

the

> custom wetsuits for Willie. Would you send it to me when you can?

Thank you!

> Also, a few of you had asked that I let you know how our appt w/Dr

Harbison

> went.(thanks for caring:) Just before we left for NY our GI dr

had scheduled

> a gtube insertion and things were not going too well. Dr Harbison

has changed

> all that for us. She is absolutely amazing. She told Willie that

his mother

> cannot eat for him, that he has to work harder and ,without

threatening,

> somehow let him know that it's up to him to eat enough to stay

off a gtube.

> This transfer of responsibility from me to Willie has been

nothing short of a

> metamorphosis for us both. He is eating and really, really

trying. At 4 and a

> half, he's asking calorie counts and if he should maybe have some

protein.

> Experience tells me not to feel like we are out of the woods,

but ,boy, what an

> incredible relief. I didn't know just how on edge I was. So, for

now, no

> tube, just changes in some meds, timing, etc. She is so on it

with these kids.

> Thanks for listening again!

> Kathy (Jack, 6, non-RSS and Willie, 4, RSS< Periactin,

Genotropin, Zantac,25

> lbs, 92 cm)

>

>

>

[Guest guest]

hi kathy!!

i am glad to hear your appt with dr h went well!! email me soon!!

jodie c

> Hi and everyone,

>

> Dr Harbison recommended that I email you,, for the info on

the

> custom wetsuits for Willie. Would you send it to me when you can?

Thank you!

> Also, a few of you had asked that I let you know how our appt w/Dr

Harbison

> went.(thanks for caring:) Just before we left for NY our GI dr

had scheduled

> a gtube insertion and things were not going too well. Dr Harbison

has changed

> all that for us. She is absolutely amazing. She told Willie that

his mother

> cannot eat for him, that he has to work harder and ,without

threatening,

> somehow let him know that it's up to him to eat enough to stay

off a gtube.

> This transfer of responsibility from me to Willie has been

nothing short of a

> metamorphosis for us both. He is eating and really, really

trying. At 4 and a

> half, he's asking calorie counts and if he should maybe have some

protein.

> Experience tells me not to feel like we are out of the woods,

but ,boy, what an

> incredible relief. I didn't know just how on edge I was. So, for

now, no

> tube, just changes in some meds, timing, etc. She is so on it

with these kids.

> Thanks for listening again!

> Kathy (Jack, 6, non-RSS and Willie, 4, RSS< Periactin,

Genotropin, Zantac,25

> lbs, 92 cm)

>

>

>