Re:

[Guest guest]

Dear

I am with you dear, and know precisely where you are at. There are such

conflicting emotions at a time like this. A sense of wanting to everything

possible, but also the feeling that we do not want to prolong a life of

suffering. I am thinking of you every day, and hope that in some way I can share

your burden, because I know that I certainly cant ease it.

We are at perfect peace with Hannah's death, and I honestly would love to hear

from you if you would like to write. Any questions......please do ask, and I

mean about anything at all, there is no topic which is too sensitive because God

has given me very broa shoulders. Any fears, thoughts,

ponderings....whatever.....I promise to be here for you.

>but I feel like if we lost her now, we lose her on our terms, with her

comfortable at home....

Not only on your terms , but quite probably on her terms as well. I think

our sick children know when they want to stop the fight and move on. Hannah

certainly did.

Please give your husband a big hug from me, and another one from my husband

Gavan, and take two more for yourself as well. Give your precious gentle

kisses from us too.

Much love

[Guest guest]

Dear

I am with you dear, and know precisely where you are at. There are such

conflicting emotions at a time like this. A sense of wanting to everything

possible, but also the feeling that we do not want to prolong a life of

suffering. I am thinking of you every day, and hope that in some way I can share

your burden, because I know that I certainly cant ease it.

We are at perfect peace with Hannah's death, and I honestly would love to hear

from you if you would like to write. Any questions......please do ask, and I

mean about anything at all, there is no topic which is too sensitive because God

has given me very broa shoulders. Any fears, thoughts,

ponderings....whatever.....I promise to be here for you.

>but I feel like if we lost her now, we lose her on our terms, with her

comfortable at home....

Not only on your terms , but quite probably on her terms as well. I think

our sick children know when they want to stop the fight and move on. Hannah

certainly did.

Please give your husband a big hug from me, and another one from my husband

Gavan, and take two more for yourself as well. Give your precious gentle

kisses from us too.

Much love

[Guest guest]

,

Since your husband had no symptoms of his PMG before, I would imagine his

prognosis is very good. It may have made him more susceptible to seizure

with the accident, but then again, a trauma can cause seizure in anyone.

Hopefully with the meds he will not have more.

As far as treatment, it's the results of the PMG that get treated as opposed

to the PMG itself, and it seems you are already doing that. Was the neuro

appointment informative for you?

Best wishes,

Christie, mom to Sam (11 years old, PMG)

[Guest guest]

,

Since your husband had no symptoms of his PMG before, I would imagine his

prognosis is very good. It may have made him more susceptible to seizure

with the accident, but then again, a trauma can cause seizure in anyone.

Hopefully with the meds he will not have more.

As far as treatment, it's the results of the PMG that get treated as opposed

to the PMG itself, and it seems you are already doing that. Was the neuro

appointment informative for you?

Best wishes,

Christie, mom to Sam (11 years old, PMG)

[Guest guest]

,

Since your husband had no symptoms of his PMG before, I would imagine his

prognosis is very good. It may have made him more susceptible to seizure

with the accident, but then again, a trauma can cause seizure in anyone.

Hopefully with the meds he will not have more.

As far as treatment, it's the results of the PMG that get treated as opposed

to the PMG itself, and it seems you are already doing that. Was the neuro

appointment informative for you?

Best wishes,

Christie, mom to Sam (11 years old, PMG)

[Guest guest]

Dear ,

Thank you for the information. I was told about Robinul, but my doctor refuses

to prescribe it for my son. He said it isnt used in children. My son

secretions are so bad that he sometimes turns blue. When is sick with a cold

its really bad. That's one reason my son sleeps on his stomach, otherwise he

can't sleep for gagging.

Thanks again,

Marilyn Jorden's mom

>

> > Hello, I was wondering if any of your

> children with PMG has a

> problem with

> > drooling?

>

> I think a lot of our kids struggle with

> drooling and coordinating

> swallow of their own secretions. There is a

> drug called Robinul that

> can help. I believe it comes as a patch. I've

> also read that botox

> injections into the salivary glands can help a

> lot. We have not

> addressed drool issues -- I guess it's not a

> priority for us just

> yet, but I can relate to the many bib changes.

>

> rachel, mom of boys

>

>

>

[Guest guest]

Dear ,

Thank you for the information. I was told about Robinul, but my doctor refuses

to prescribe it for my son. He said it isnt used in children. My son

secretions are so bad that he sometimes turns blue. When is sick with a cold

its really bad. That's one reason my son sleeps on his stomach, otherwise he

can't sleep for gagging.

Thanks again,

Marilyn Jorden's mom

>

> > Hello, I was wondering if any of your

> children with PMG has a

> problem with

> > drooling?

>

> I think a lot of our kids struggle with

> drooling and coordinating

> swallow of their own secretions. There is a

> drug called Robinul that

> can help. I believe it comes as a patch. I've

> also read that botox

> injections into the salivary glands can help a

> lot. We have not

> addressed drool issues -- I guess it's not a

> priority for us just

> yet, but I can relate to the many bib changes.

>

> rachel, mom of boys

>

>

>

[Guest guest]

Hello ,

Thanks for the information. I am starting to have serious doubts about my

doctor. Its seem that he doesnt have a clue on how to treat my son Jorden. I

ask questions and he has no answers. I just keep getting sent to another then

another doctor. Since l live in such a small city information and medical

assistance in very limited. Everything that has been done for my son has been

because of me pushing him into doing it. Such as getting his MRI done to see

why my son was'nt progressing when he was 10 months old.

Thanks again

Jorden's Mom Marilyn

> Hi! My daughter, Koti is 19 months

> old and has been on

> Robinol for quite a long time now- so I dont

> understand why the doc is

> telling you it is not used in children. I have

> heard of it being a patch-

> but Koti's comes in liquid form in a vile and

> needle syringe. She has a

> g-tube so I dont have to stick her or anything.

> It has worked really well

> for her.

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

> Visit www.juno.com

>

>

>

>

[Guest guest]

Hello ,

Thanks for the information. I am starting to have serious doubts about my

doctor. Its seem that he doesnt have a clue on how to treat my son Jorden. I

ask questions and he has no answers. I just keep getting sent to another then

another doctor. Since l live in such a small city information and medical

assistance in very limited. Everything that has been done for my son has been

because of me pushing him into doing it. Such as getting his MRI done to see

why my son was'nt progressing when he was 10 months old.

Thanks again

Jorden's Mom Marilyn

> Hi! My daughter, Koti is 19 months

> old and has been on

> Robinol for quite a long time now- so I dont

> understand why the doc is

> telling you it is not used in children. I have

> heard of it being a patch-

> but Koti's comes in liquid form in a vile and

> needle syringe. She has a

> g-tube so I dont have to stick her or anything.

> It has worked really well

> for her.

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

> Visit www.juno.com

>

>

>

>

[Guest guest]

Hello ,

Thanks for the information. I am starting to have serious doubts about my

doctor. Its seem that he doesnt have a clue on how to treat my son Jorden. I

ask questions and he has no answers. I just keep getting sent to another then

another doctor. Since l live in such a small city information and medical

assistance in very limited. Everything that has been done for my son has been

because of me pushing him into doing it. Such as getting his MRI done to see

why my son was'nt progressing when he was 10 months old.

Thanks again

Jorden's Mom Marilyn

> Hi! My daughter, Koti is 19 months

> old and has been on

> Robinol for quite a long time now- so I dont

> understand why the doc is

> telling you it is not used in children. I have

> heard of it being a patch-

> but Koti's comes in liquid form in a vile and

> needle syringe. She has a

> g-tube so I dont have to stick her or anything.

> It has worked really well

> for her.

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

> Visit www.juno.com

>

>

>

>

[Guest guest]

Thank you for the welcome back...the trip truly was a blessing. The

hectic part was the streets, interstates, highways that intersect

everything there. Wow, what a confusing mess. I guess I am used to Des

Moines where if I see a sign that points to an on ramp stating I80, if I

get on the ramp I will be on I80. Well, this is not the case in

Minnesota. Plus, if you stand on one side of a street you are in one

city and the other side of the street is a different city. In fact, our

hotel was in Minnetonka, and across the parking lot was Saint Louis

Park...whats up with that? All in all, it was a blast, the company was

fabulous, time was never an issue and everything was relaxing. I am

sure I will be going back again.

How have you been doing? Still taking care of yourself? I have missed

the group here, and it is nice to get back into somewhat of a routine.

Truly wonderful seeing your name in here. :-))

Still keeping you in my prayers.

Sandie

Des Moines, IA

[Guest guest]

It is wonderful seeing a post from you. How have you been? How is your

mom doing? I see she is still having hallucinations. I think the

Exelon is an excellent choice. I am not sure of help with

hallucinations, but do know it is extremely helpful with psychosis.

Maybe this would help. My dad was started on this in February, and had

a remarkable change. Unfortunately the disease progressed so rapidly

after that. Please try to keep us posted. Saying prayers for you and

for your mom.

Sandie

Des Moines, IA

[Guest guest]

Wow, haven't seen your name in here for a while. As I said to , it

is also wonderful seeing a post from you. Feels as if I lose touch of

friends when I don't have an open communication line here. Hoping life

is treating you kind!

Sandie

Des Moines, IA

[Guest guest]

I like the phrase not here. We have had so much not here in the

past few weeks, that when she is here we hardly know how to enjoy

it. My mom is progressing to the point where at times the not here

can last for a couple days. That is when I feel a great need ot

talk about NursingHOme care. I wish I was able to make the decission

of using some of the dredded drugs, aas you have been able to do. I

feel the need when anziety is so great, or she is asking for

something, and when she isn't her, but on the good days, how can

one be brave enough to take the risk. Good for you and your courage.

Welcome and good for you. Joanne

[Guest guest]

I like the phrase not here. We have had so much not here in the

past few weeks, that when she is here we hardly know how to enjoy

it. My mom is progressing to the point where at times the not here

can last for a couple days. That is when I feel a great need ot

talk about NursingHOme care. I wish I was able to make the decission

of using some of the dredded drugs, aas you have been able to do. I

feel the need when anziety is so great, or she is asking for

something, and when she isn't her, but on the good days, how can

one be brave enough to take the risk. Good for you and your courage.

Welcome and good for you. Joanne

[Guest guest]

He must have gotten it right as it came out. It was only approved by the FDA

on Aug 12, and the shipments were in the pharmacies in early Sept.

K

[Guest guest]

So glad you are taking care of yourself. I have a friend that has taken

Lexapro and has for 3 or 4 months. Maybe it has been available in Iowa

longer. He has had wonderful results with it. Please keep us posted as

to how it helps you.

Sandie

Keeping Firby cold in Iowa...while you are in Sunny Miami...

[Guest guest]

So glad you are taking care of yourself. I have a friend that has taken

Lexapro and has for 3 or 4 months. Maybe it has been available in Iowa

longer. He has had wonderful results with it. Please keep us posted as

to how it helps you.

Sandie

Keeping Firby cold in Iowa...while you are in Sunny Miami...

[Guest guest]

,

How wonderful to hear such news from you. I am so glad that is regaining

her skills, even though it is such a slow process. At this stage any progress

must be exciting. Those small sz's sound a bit like myoclonics ..... glad they

are not as severe as previously.

Hooray for the sale of your business, I'm sure you will still be very busy

taking care of . I'm glad you've made a choice about her treatment too.

Whatever the choice is, it is good to have a plan, so that if/when faced with

it, some of the pain may be taken out of it. You have all been through a very

tough time, esp your little , and I can imagine that you must feel releived

to have some sense of control now. Best wishes to you all for a better year.

Special hug for

- Australia; mum to angel Hannah (wings 30/10/02, 5ys), Ben 11yrs, and

13 yrs

[Guest guest]

,

How wonderful to hear such news from you. I am so glad that is regaining

her skills, even though it is such a slow process. At this stage any progress

must be exciting. Those small sz's sound a bit like myoclonics ..... glad they

are not as severe as previously.

Hooray for the sale of your business, I'm sure you will still be very busy

taking care of . I'm glad you've made a choice about her treatment too.

Whatever the choice is, it is good to have a plan, so that if/when faced with

it, some of the pain may be taken out of it. You have all been through a very

tough time, esp your little , and I can imagine that you must feel releived

to have some sense of control now. Best wishes to you all for a better year.

Special hug for

- Australia; mum to angel Hannah (wings 30/10/02, 5ys), Ben 11yrs, and

13 yrs

[Guest guest]

Hi Leanne

I am so sad for your friend losing her little boy. I agree with that it

is harder on those left behind, because those who pass on are no longer

suffering. I'll be thinking of 's family as they face the coming time of

grief in all its different forms.

Mother's love ..... what a lovely name for a rose. I think we could all do with

that one in our gardens. Your water restrictions are much more severe than ours.

We have unlimited hand hosing at the moment, and timed sprinklers at night, but

I tend to concentrate on the plants which are special to me, such as the roses,

pot plants, and the sentimental things from my mum's garden.

Thanks for telling me about Isaac's leg braces. I am always interested to hear

about the different types of equipment that others use, just in case I can tell

someone else about it. Sounds like they are working wonders for your little man.

WTG Isaac!!!

love and hugs

- Australia; mum to angel Hannah (wings 30/10/02, 5ys), Ben 11yrs, and

13 yrs

[Guest guest]

,

I think that is so great the way you and your husband celebrated Hannahs

birthday. You are such an amazing person.

and Kennedy(3 1/2yrs.,pmg)

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[Guest guest]

,

I think that is so great the way you and your husband celebrated Hannahs

birthday. You are such an amazing person.

and Kennedy(3 1/2yrs.,pmg)

_________________________________________________________________

STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

[Guest guest]

LOL I do have a brother out there someplace, but not a sister that I know of

LOL Nola

-- Re: Fun-getting to know each other

survey!

LOL, Nola ~ Are you sure you aren't my long-lost sister????

Luv

Michele

----- Original Message -----

From: N

, I had a chevy vega too, gosh I haven't heard that name in so

long

I traveled the states in it when I was younger LOL a little red vega.

Tranny, engine and all went out on that thing after I came back to

Minnesota

from California. Whoa, going over the mountains in that thing was a bit

frightful, the Engine and Tranny both starting to go out on that car as I

was going over the mountains . Nola

[Guest guest]

LOL I do have a brother out there someplace, but not a sister that I know of

LOL Nola

-- Re: Fun-getting to know each other

survey!

LOL, Nola ~ Are you sure you aren't my long-lost sister????

Luv

Michele

----- Original Message -----

From: N

, I had a chevy vega too, gosh I haven't heard that name in so

long

I traveled the states in it when I was younger LOL a little red vega.

Tranny, engine and all went out on that thing after I came back to

Minnesota

from California. Whoa, going over the mountains in that thing was a bit

frightful, the Engine and Tranny both starting to go out on that car as I

was going over the mountains . Nola