/Louise/Jayne/Holly//Laci

[Guest guest]

<<Not knowing is always so stressful. I believe in healing miracles! >>

Hi, Everyone.......that IS the hardest part....waiting for all the

FINAL tests to find out if it is this sine Scleroderma!!! The gastro doc is

saying wait for the endoscopy and CT scan and then, talk to the rheum

doc....that's Dec 28th.......an eternity for me!!!

<<I don’t even know who I could ask. I have been calling on Archangel

Raphael the healing angel Louise>> Louise....that is why I tried to

join

those site....to get some answers to questions. We don't even have a

Scleroderma group here in the Lancaster area to call!!! I always go straight

to St.

Padre Pio for our health issues. Hopefully, he's up there listening and

talking to Jesus about Gareth. " Hey, lets do something with this 'squeaky

wheel' here. This lady is really starting to bug me!!! " For all you

non-Catholics.......disregard those last lines!!!

<<Does Gareth know what's going on on Tuesday and Friday? Does he have to

be out for both? How's your husband and dealing with this?..........I

know what you mean about approval for listserv's, I joined a sign language

listserv days ago in hopes of finding some Christmas songs in sign - nobody's

gotten back to me yet for approval let alone even being able to post! UGH

-Jayne>> Jayne......Gareth knows that on Tues the doc will look

down

his throat....he will be under anesthesia. He is EXPECTING the doc to " fix my

food tube " . He's going to be very upset when the doc says there is nothing

he can do to fix it. On Friday he will have a CT scan....no anesthesia.

He's had them before and knows to lay still. He actually gets quite comfy and

doses off!!! DH has been in Germany since a week ago Wed. He's due back

home tomorrow night. I haven't said anything to him about it......he's had a

bad week there. The running joke in our marriage is that he is never around

when I really need him!!! I do a lot of crying and what if's by myself!!!

...his only answer was " Why does it always have to be Gareth? Why not me? "

He feels horrible about it, but I have downplayed the severity of it to him

since he's in college and I really don't want him to worry about it. As for

the other listservs....what gives? Talk about snotty!!! Glad it's not just

me.

<<We can even talk about all the disgusting poop issues. Holly>>

Holly....hey, this is the best site....poop and all!!!

..... Thanks for the prayers. * I * need them.

Laci....sounds like Gareth at that age. I can only say, though, he did calm

down and testing is a whole lot easier. Prayers coming your way, too. It

pisses me off that docs don't take into account what the parents say/know.

Hopefully, you will find one who will listen. Why the EEG, anyways?

Take care, Everyone, and once again, thanks for being

here and all the prayers. You have no idea how much I appreciate them.

Margaret

[Guest guest]

Gosh, Margaret, I sure hope things start calming down for all of you

soon. I'm thinking about all of you everyday and will be sending out

the good vibes in your direction.

Honestly, I have no idea why they want an EEG. We know he has

seizures, and we know he has them while eating. But there's no way on

this earth that he's going to eat at a Docs office and he's definatly

not going to eat while having a bunch of medical devices attached to

him. If he's awake for that part he'll be knocking people's heads off.

So, in essence, I have no idea why they'd bother, they're just going

to come back to me and tell me that they can't see anything on the

EEG(DUH, DOC!). I'm not sure why they don't just do an MRI, or a CT

Scan, but for that he'd have to be sedated as well, and from the looks

of it, thats not their policy. But, in my opinion, they have some

pretty stupid policies.

sounds a whole lot like my Skylar. Skylar is beside himself that

Landon is having all this stuff and often says things like " When we

move, I'm not taking my own room. No one can hear him like I can and

it's my job to watch him at night. " , " Hunter can't take care of him

like I can. " , and " Why does it have to be Landon?? Hasn't he been

through enough? " Skylar is 11, and sometimes....I actually think he

might be going on 40. Not sure how I feel about that one.

>

> <<Not knowing is always so stressful. I believe in healing miracles!

>>

>

> Hi, Everyone.......that IS the hardest part....waiting for all

the

> FINAL tests to find out if it is this sine Scleroderma!!! The

gastro doc is

> saying wait for the endoscopy and CT scan and then, talk to the rheum

> doc....that's Dec 28th.......an eternity for me!!!

>

> <<I don’t even know who I could ask. I have been calling on

Archangel

> Raphael the healing angel Louise>> Louise....that is why I

tried to join

> those site....to get some answers to questions. We don't even have a

> Scleroderma group here in the Lancaster area to call!!! I always go

straight to St.

> Padre Pio for our health issues. Hopefully, he's up there

listening and

> talking to Jesus about Gareth. " Hey, lets do something with this

'squeaky

> wheel' here. This lady is really starting to bug me!!! " For all you

> non-Catholics.......disregard those last lines!!!

>

> <<Does Gareth know what's going on on Tuesday and Friday? Does he

have to

> be out for both? How's your husband and dealing with

this?..........I

> know what you mean about approval for listserv's, I joined a sign

language

> listserv days ago in hopes of finding some Christmas songs in sign

- nobody's

> gotten back to me yet for approval let alone even being able to

post! UGH

> -Jayne>> Jayne......Gareth knows that on Tues the doc

will look down

> his throat....he will be under anesthesia. He is EXPECTING the doc

to " fix my

> food tube " . He's going to be very upset when the doc says there is

nothing

> he can do to fix it. On Friday he will have a CT scan....no

anesthesia.

> He's had them before and knows to lay still. He actually gets

quite comfy and

> doses off!!! DH has been in Germany since a week ago Wed. He's

due back

> home tomorrow night. I haven't said anything to him about

it......he's had a

> bad week there. The running joke in our marriage is that he is

never around

> when I really need him!!! I do a lot of crying and what if's by

myself!!!

> ...his only answer was " Why does it always have to be Gareth?

Why not me? "

> He feels horrible about it, but I have downplayed the severity of

it to him

> since he's in college and I really don't want him to worry about

it. As for

> the other listservs....what gives? Talk about snotty!!! Glad it's

not just

> me.

>

> <<We can even talk about all the disgusting poop issues. Holly>>

> Holly....hey, this is the best site....poop and all!!!

> ..... Thanks for the prayers. * I * need them.

> Laci....sounds like Gareth at that age. I can only say, though, he

did calm

> down and testing is a whole lot easier. Prayers coming your way,

too. It

> pisses me off that docs don't take into account what the parents

say/know.

> Hopefully, you will find one who will listen. Why the EEG,

anyways?

> Take care, Everyone, and once again, thanks for

being

> here and all the prayers. You have no idea how much I appreciate them.

> Margaret

>

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