Re: Short RSS story in Parents Magazine

[Guest guest]

Meribeth,

That's great that your son was in Parents Magazine! What a great way

to help educate people! How was he chosen??? I remember I was once

called by an editor from Woman's Day or Family Circle and she

interviewed me on the phone, but told me that Max was not sick enough

to be in their magazine. On the one hand, that was good news, but on

the other, I was sad because I wanted people to know about RSS and to

find others who had it. This was about 11 years ago. Our regional

newspaper did an article, though. It was a lot of fun to be

interviewed and photographed and such.

Congratulations!

Jodi

[Guest guest]

Hi Meribeth, I did see the article and my son also has RSS. I was wondering

if you plan on attending the RSS convention in July. Would like to meet you

and TJ. It was really great reading the article and I showed it to all my

coworkers.

[Guest guest]

> Jodi,

Parents called Easter Seals, which only does pediatric therapy,

looking for a midwest child to profile. Easter Seals asked us if we

would do it as RSS is not a special need a lot of people have heard

about. We gladly excepted and were thrilled to see TJ in the

magazine.

Hope all is well with Max. How is the Cisipride working? We thought

that was going to be our next decision, wherher or not to use it but

TJ's reflux was still so bad the gj tube was our only option. He has

a fundo and tests indicate it is still functioning as it is supposed

to but he continues to vomit.

Really hope all is well on your end,

Meribeth

[Guest guest]

>

TJ and I will be at the conference. Look forward to meeting you.

Meribeth

Hi Meribeth, I did see the article and my son also has RSS. I was

wondering

> if you plan on attending the RSS convention in July. Would like to

meet you

> and TJ. It was really great reading the article and I showed it to

all my

> coworkers.

[Guest guest]

Meribeth,

I wish I could say that Max is doing well, but he is not. He cannot

take two of the meds the urologist prescribed for his bladder

contractions because they are aggravating his nausea/vomiting. Even

without the meds, Max is having these episodes where he hiccups and

then we know he is going to throw up some or all of his food. He is

also very, very tired. I'm at wit's end. I intend to call Dr. H.

and/or his GI doctor tomorrow. We have tried to work with his GI

here in NJ, but I think that we will wind up having to go into NYC.

I'm so confused.

Meanwhile, the bladder problem is still there and I don't want him to

have to have the next set of tests if we can avoid them. It requires

a catheter to be inserted and it is uncomfortable. Max has been

through so much already. What in the world do we do? My husband

and I just shake our heads.

We are having a graduation barbecue for Max today. What started out

as 14 people is now up to at least 20. We had to move it to my

friend's house because her inside house is larger and the weather is

too bad here to have it on our nice, big deck and my pretty

backyard. Will this rain ever end????

By the way, Max was supposed to have a gj tube, but he has been

eating better with the Cisapride, so we have put that off for now. I

don't know what is going to happen with the current situation,

though. One thing on our side is that Max likes to eat, so even if

he throws up, he starts to eat again when he feels better. As long

as he does not lose weight, he will be okay. I do know, however,

that if he has the fundo and/or pyloroplasty, he will have to have

another button. There is something about the venting that it

allows.

Jodi

[Guest guest]

Meribeth,

Our son's preschool teacher actually told me about TJ's article last

week. She couldn't believe it, since she knows how rare RSS. I

can't wait to read it.

Alison

>

> Hi,

>

> If you get Parents Magazine check out my son on page 144. The

> article profiles several special needs children around the

country.

> The point of the article is to show that special needs kids can do

a

> lot of things just like any child.

>

> Keep in mind when you read it they wrote the article and used

wording

> of their choice. TJ has a g-tube, well now he has a gj tube, they

> refer to it as a special feeding shunt.

>

> The article has already caught the eye of several people who have

> phoned me. One has a son with RSS who is doing quite well, she

just

> wanted to make sure TJ was being treated, very thoughtful.

>

> See you in July at the conference,

> Meribeth

[Guest guest]

Jodi,

Sorry to hear Max is having challenges again. Just wanted to mention

that the gj tube now comes as a button. It has the j port on top and

the g port on the side. THe gj Mic Key is a little larger the just

the g Mic Key but still a huge improvement over the long tube.

Your are in our thoughts and prayers,

Meribeth

[Guest guest]

Meribeth!

Great! I just found the magazine (here in Mexico it is a little

interesting to find the english magazines). What a handsome boy you

have there. I am showing it to all my friends here!

What a great way to get the word out about our kids.

Beth H.

[Guest guest]

What issue month is it of Parents that you all are talking about? I would love

to see the article.

Re: Short RSS story in Parents Magazine

Meribeth!

Great! I just found the magazine (here in Mexico it is a little

interesting to find the english magazines). What a handsome boy you

have there. I am showing it to all my friends here!

What a great way to get the word out about our kids.

Beth H.

[Guest guest]

What issue month is it of Parents that you all are talking about? I would love

to see the article.

Re: Short RSS story in Parents Magazine

Meribeth!

Great! I just found the magazine (here in Mexico it is a little

interesting to find the english magazines). What a handsome boy you

have there. I am showing it to all my friends here!

What a great way to get the word out about our kids.

Beth H.

[Guest guest]

July 2003....we just picked up our copy...way to go TJ!

> What issue month is it of Parents that you all are talking about?

I would love to see the article.

> Re: Short RSS story in Parents Magazine

>

>

> Meribeth!

>

> Great! I just found the magazine (here in Mexico it is a little

> interesting to find the english magazines). What a handsome boy

you

> have there. I am showing it to all my friends here!

>

> What a great way to get the word out about our kids.

>

> Beth H.

>

>

>

>

>

>

[Guest guest]

>

It is the July issue.

What issue month is it of Parents that you all are talking about? I

would love to see the article.

> Re: Short RSS story in Parents Magazine

>

>

> Meribeth!

>

> Great! I just found the magazine (here in Mexico it is a little

> interesting to find the english magazines). What a handsome boy

you

> have there. I am showing it to all my friends here!

>

> What a great way to get the word out about our kids.

>

> Beth H.

>

>

>

>

>

>