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Re: Henry's visit with Dr.H - what a relief

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Hi Leah,

has been wondering if Ashely would be making a trip to NYC too.

Please let us know if you need some place to stay. It would be great to have

you all visit.

Thanks for the congrats about Henry and hang in there with the periactin.

Once Henry's reflux got under control a bit it made all the difference in the

world about quantity. He still has his " just a couple of crackers " days but I

do think periactin does have an effect on appetite.

Love to all,

H.,

Henry - 4yrs old, RSS 39in, 32lbs

- 8yrs old, nonRSS, 45lbs, 48iin

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Hi ,

Glad to hear Henry's appointment went well. Hope to see you guys soon. Do

you plan on going to that gathering in NJ that Jodi Z is planning on Oct 16th?

We are thinking about it and I know she said she wants to know by Oct 2. Let

me know if you are going.

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Hi !

I'm so glad to hear that you had a great appt. with Dr H! Henry

seems to be doing pretty well and that's always the main goal. Our

next weigh-in with Olivia is in 2 weeks so we'll see if the

Periactin is kicking in or not. Other than being a little bit more

sleepy in the evenings she's had very few cranky episodes. Dr H was

very right that her reflux wasn't under control and the Periactin

was making it worse the last time that we tried it. Our Ped doesn't

know that we're using it right now since he doesn't believe in it

and doesn't think that it works but since the GI prescribed it I

figured that he didn't need to know about it right now!

We had such a great time meeting you, and the kids at the

convention and I'm feeling guilty that I haven't kept in better

touch. I still can't thank you enough for taking care of

when we had our appointment and for letting her hang out with you

guys over the weekend. really misses also and has

been BEGGING us to go to NYC!! Wouldn't that be a big trip!! Ash

will be e-mailing her soon now that we're back into routine with

school and such.

Give Henry a big high-5 for me and hugs all round! Can't wait to

chat with you soon.

Leah, mom to 9 years, and Olivia 4.75yrs, 18lbs, 33 " , RSS,

OI, lots of meds.

> Hi all,

>

> Henry had a fantastic appointment with Dr.H last week compared

with his May

> visit. He is up to 39in and 32 1/2 lbs - that's three inches and

2 1/2 lbs

> since he began GHT in March . She only increased is periactin and

left

> everything else the same. I thought she would decrease his tube

feedings at night but

> she said his muscle tone was good and there was no extra weight on

him even

> though he is almost to the 50% at weight for stature.

>

> His last visit was a disaster with Dr.H being very angry at the

nurses for

> not taking any blood work for a baseline BEFORE he began ght, and

then was very

> upset at Henry for is lack of eating any new foods. I then

mistakenly brought

> a fruit roll up in the back pack and when Henry took it out to eat

I thought

> she was going to blow. She then suggested he might have PDD

because he

> averted his eyes when she was speaking to him.

>

> So I spent the past couple of months trying to discover more about

PDD and no

> one I spoke to from teachers, peditricians to child psychologists

thought PDD

> was the right direction. So I tried to limit the possiblity of a

repeat

> performance at our next Dr. H visit. I scheduled the visit for

the afternoon,

> only brought Dr.H friendly snacks and brought Henry's sister

to keep

> him occupied. And it worked, Dr. H actually said it was good to

have scene

> Henry at his worst and then in a more normal Henry mode. The

whole experience

> gave me confidence that my opinions as Henry's mother do matter.

Even though I

> know Henry would not be where he is today with out being under the

care of Dr.H,

> she is his endo and understanding the daily life of a 4yr old boy

might not

> be her speciality.

>

> We ended up waiting an hour but from what everyone else has been

saying that

> was long. The space is much larger but she seemed isolated. She

has no nurse

> and Yadria is in another building. I am not sure how far away the

floor for

> her surgery patients is from her office? I asked how she felt

about her new

> " digs " she said nice but I can't imagine moving from such an

established

> position to such a new environment. I don't think the move will

have an effect on

> the care she offers her patients because she is too dedicated to

our kids but

> personally it must be difficult especially in such an ego driven

culture.

>

> Hope you all are enjoying the holiday weekend - thinking of our

Fla friends

> and their safe haven and Jodi Z, my condolences about the loss of

your

> mother-in-law.

>

>

> H.

> Henry - 4yrs old, RSS 39in, 32lbs

> - 8yrs old, nonRSS, 45lbs, 48iin

>

>

>

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Hi !

I'm so glad to hear that you had a great appt. with Dr H! Henry

seems to be doing pretty well and that's always the main goal. Our

next weigh-in with Olivia is in 2 weeks so we'll see if the

Periactin is kicking in or not. Other than being a little bit more

sleepy in the evenings she's had very few cranky episodes. Dr H was

very right that her reflux wasn't under control and the Periactin

was making it worse the last time that we tried it. Our Ped doesn't

know that we're using it right now since he doesn't believe in it

and doesn't think that it works but since the GI prescribed it I

figured that he didn't need to know about it right now!

We had such a great time meeting you, and the kids at the

convention and I'm feeling guilty that I haven't kept in better

touch. I still can't thank you enough for taking care of

when we had our appointment and for letting her hang out with you

guys over the weekend. really misses also and has

been BEGGING us to go to NYC!! Wouldn't that be a big trip!! Ash

will be e-mailing her soon now that we're back into routine with

school and such.

Give Henry a big high-5 for me and hugs all round! Can't wait to

chat with you soon.

Leah, mom to 9 years, and Olivia 4.75yrs, 18lbs, 33 " , RSS,

OI, lots of meds.

> Hi all,

>

> Henry had a fantastic appointment with Dr.H last week compared

with his May

> visit. He is up to 39in and 32 1/2 lbs - that's three inches and

2 1/2 lbs

> since he began GHT in March . She only increased is periactin and

left

> everything else the same. I thought she would decrease his tube

feedings at night but

> she said his muscle tone was good and there was no extra weight on

him even

> though he is almost to the 50% at weight for stature.

>

> His last visit was a disaster with Dr.H being very angry at the

nurses for

> not taking any blood work for a baseline BEFORE he began ght, and

then was very

> upset at Henry for is lack of eating any new foods. I then

mistakenly brought

> a fruit roll up in the back pack and when Henry took it out to eat

I thought

> she was going to blow. She then suggested he might have PDD

because he

> averted his eyes when she was speaking to him.

>

> So I spent the past couple of months trying to discover more about

PDD and no

> one I spoke to from teachers, peditricians to child psychologists

thought PDD

> was the right direction. So I tried to limit the possiblity of a

repeat

> performance at our next Dr. H visit. I scheduled the visit for

the afternoon,

> only brought Dr.H friendly snacks and brought Henry's sister

to keep

> him occupied. And it worked, Dr. H actually said it was good to

have scene

> Henry at his worst and then in a more normal Henry mode. The

whole experience

> gave me confidence that my opinions as Henry's mother do matter.

Even though I

> know Henry would not be where he is today with out being under the

care of Dr.H,

> she is his endo and understanding the daily life of a 4yr old boy

might not

> be her speciality.

>

> We ended up waiting an hour but from what everyone else has been

saying that

> was long. The space is much larger but she seemed isolated. She

has no nurse

> and Yadria is in another building. I am not sure how far away the

floor for

> her surgery patients is from her office? I asked how she felt

about her new

> " digs " she said nice but I can't imagine moving from such an

established

> position to such a new environment. I don't think the move will

have an effect on

> the care she offers her patients because she is too dedicated to

our kids but

> personally it must be difficult especially in such an ego driven

culture.

>

> Hope you all are enjoying the holiday weekend - thinking of our

Fla friends

> and their safe haven and Jodi Z, my condolences about the loss of

your

> mother-in-law.

>

>

> H.

> Henry - 4yrs old, RSS 39in, 32lbs

> - 8yrs old, nonRSS, 45lbs, 48iin

>

>

>

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Hi !

I'm so glad to hear that you had a great appt. with Dr H! Henry

seems to be doing pretty well and that's always the main goal. Our

next weigh-in with Olivia is in 2 weeks so we'll see if the

Periactin is kicking in or not. Other than being a little bit more

sleepy in the evenings she's had very few cranky episodes. Dr H was

very right that her reflux wasn't under control and the Periactin

was making it worse the last time that we tried it. Our Ped doesn't

know that we're using it right now since he doesn't believe in it

and doesn't think that it works but since the GI prescribed it I

figured that he didn't need to know about it right now!

We had such a great time meeting you, and the kids at the

convention and I'm feeling guilty that I haven't kept in better

touch. I still can't thank you enough for taking care of

when we had our appointment and for letting her hang out with you

guys over the weekend. really misses also and has

been BEGGING us to go to NYC!! Wouldn't that be a big trip!! Ash

will be e-mailing her soon now that we're back into routine with

school and such.

Give Henry a big high-5 for me and hugs all round! Can't wait to

chat with you soon.

Leah, mom to 9 years, and Olivia 4.75yrs, 18lbs, 33 " , RSS,

OI, lots of meds.

> Hi all,

>

> Henry had a fantastic appointment with Dr.H last week compared

with his May

> visit. He is up to 39in and 32 1/2 lbs - that's three inches and

2 1/2 lbs

> since he began GHT in March . She only increased is periactin and

left

> everything else the same. I thought she would decrease his tube

feedings at night but

> she said his muscle tone was good and there was no extra weight on

him even

> though he is almost to the 50% at weight for stature.

>

> His last visit was a disaster with Dr.H being very angry at the

nurses for

> not taking any blood work for a baseline BEFORE he began ght, and

then was very

> upset at Henry for is lack of eating any new foods. I then

mistakenly brought

> a fruit roll up in the back pack and when Henry took it out to eat

I thought

> she was going to blow. She then suggested he might have PDD

because he

> averted his eyes when she was speaking to him.

>

> So I spent the past couple of months trying to discover more about

PDD and no

> one I spoke to from teachers, peditricians to child psychologists

thought PDD

> was the right direction. So I tried to limit the possiblity of a

repeat

> performance at our next Dr. H visit. I scheduled the visit for

the afternoon,

> only brought Dr.H friendly snacks and brought Henry's sister

to keep

> him occupied. And it worked, Dr. H actually said it was good to

have scene

> Henry at his worst and then in a more normal Henry mode. The

whole experience

> gave me confidence that my opinions as Henry's mother do matter.

Even though I

> know Henry would not be where he is today with out being under the

care of Dr.H,

> she is his endo and understanding the daily life of a 4yr old boy

might not

> be her speciality.

>

> We ended up waiting an hour but from what everyone else has been

saying that

> was long. The space is much larger but she seemed isolated. She

has no nurse

> and Yadria is in another building. I am not sure how far away the

floor for

> her surgery patients is from her office? I asked how she felt

about her new

> " digs " she said nice but I can't imagine moving from such an

established

> position to such a new environment. I don't think the move will

have an effect on

> the care she offers her patients because she is too dedicated to

our kids but

> personally it must be difficult especially in such an ego driven

culture.

>

> Hope you all are enjoying the holiday weekend - thinking of our

Fla friends

> and their safe haven and Jodi Z, my condolences about the loss of

your

> mother-in-law.

>

>

> H.

> Henry - 4yrs old, RSS 39in, 32lbs

> - 8yrs old, nonRSS, 45lbs, 48iin

>

>

>

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,

Glad to here that Henry is doing so well! Yup, Dr. H has her own way

with these kids, but darn it if she doesn't get them to grow!

Storm was a very picky eater at 4 years old, Dr. H told him that when

he was finished eating to take one more bite for her every time. HE

DID IT! He would say " I'm full " I would remind him of what Dr. H said

and he would eat some more! That and the periactin finally got him

gaining weight for the first time! He's 9 now, and he is on the

charts!!!

Hang in there! Dr. H is worth it! Our kids are worth it!

Carmen, Mom to Storm, age 9, 48 inches, 53 pounds

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