Re: OT: Disabled girl's growth medically stunted

[Guest guest]

>

> If ever a doctor played God...

>

> http://news.ninemsn.com.au/article.aspx?id=157983

>

> Disabled girl's growth medically stunted

>

> Thursday Nov 2 11:34 AEDT

>

> In a report published in a medical journal this month, two doctors

describe

> a 6-year-old girl with profound, irreversible developmental

disability who

> was given high doses of estrogen to permanently halt her growth so

that her

> parents could continue to care for her at home.

Mummishka,

I can understand your feelings on this and I honestly find it

somewhat sickening. I do see their point though. I cannot imagine

what it is like to care for a child that is totally helpless and in

a grown-up body. As parents in this situation age they lose strength

as well. A fully grown adult that is incapable of caring for

themselves is quite a feat when you are young, let alone when you

are getting older.

I noticed the cover photo of Marge Grant's book A Stolen Life.

They are showing an elderly man trying to move thier 30-40 yr old

son around. Just looking at this 60'something year old man doing

this makes one feel this sort of thing might not be such a bad idea.

Eventually they will not be able to care for their dear son as

they get older. I have to admit, he doesnt seem to mind and appears

to care for him in a caring way. I have to question whether a

60something year old woman could pick up and move a grown child and

move them around. It is a sad situation indeed.

As far as the menustration thing goes, they could use something like

a menstrual cup or one of the disposable menstrual cups available

called Instead. Of course most people dont know about these

menstrual options which are much better for all females anyway.

April

[Guest guest]

>

>

I do see their point though. I cannot imagine

> what it is like to care for a child that is totally helpless and in

> a grown-up body. As parents in this situation age they lose strength

> as well. A fully grown adult that is incapable of caring for

> themselves is quite a feat when you are young, let alone when you

> are getting older.

****** I see that too, but why are they not investigating the original

cause? Not to impune their efforts, because I can't imagine being in

their shoes at all... but what I do know, is that I am of the " have to

get to the bottom of things " persuasion and I don't think I would have

been satisfied with described diagnoses.

> As far as the menustration thing goes, they could use something like

> a menstrual cup or one of the disposable menstrual cups available

> called Instead. Of course most people dont know about these

> menstrual options which are much better for all females anyway.

******* Hello Diva Cup. No, most people don't know about them - no

profit there.

-- M.

[Guest guest]

>> Do you not think that they have already tried to " cure " their

daughter...she is six years old!

> We have an 8 year old with cerebral palsy, caused by a brain injury

at birth. Not everything can be cured. Unfortunately.

**** Bless your heart, I am so sorry if I appeared to be

insensitive. I have no idea what that is like and have no place to

even open my mouth. >

> We have spent every penny we make, plus more, on treatments,

therapies, natural supplements...etc, etc, and almost every waking

moment...for 8 years.

> When the brain is badly injured....the body will follow. We will

keep our son at home with us for his entire life. He weighs 80 lbs

now, and is difficult to carry and lift, as he is tall also. I don't

know how I will manage when I am 70! and he weighs 180! Obviously we

will have to have help. I'm sure that is what this family is thinking

about. (How will we afford help? I don't know...as we have used up

all our savings, and we will not be able to save anything as we spend

it all on trying desparately to help our son)

>

> I'm not saying I would do the same as they have done, but they are

doing what they have to do to care for their child. At least they

want to keep her at home. Do you have any idea what the long term

care facilities are like for a young adult...adult with

physical/cognitive disabilities??

***** No I don't, and feel awfully for anyone in this situation.

>

> As far as a menstrual cup....you have obviously not spent any time

with someone with a physical disability. We have trouble even opening

our sons legs to clean him and get a fresh diaper on him and keep his

skin healthy. When the brain is injured it is quite common for the

muscles to become spastic and and the tendons shorten etc. She is

likely quite stiff.

> I am quite sure it would be physically impossible to insert one of

those cups into her vagina, safely and comfortably.

***** You are right, again things I didn't think of. I have used

mine safely, and introduced it to my oldest child - again no

experience with disabilities.

>

> I know you all mean well, but this is something that, unless you

have lived the life, it is very very difficult to understand.

***** Lori, I feel terrible. You are 1000% right and without

experience in this field I really should have minded my mouth. My

comments were knee jerk reactions, and in reflection, insensitive

ones at that. You are obviously a strong person, who cares deeply

for her child. I am a boob. I hope you'll accept my apology.

-- M.

[Guest guest]

, there is no need to apologize! Unfortunately, the internet does not

express -tone-. I am not speaking angrily, or hurtly, merely trying to point out

that a disabled person, has many differences than an " able " person.....I know

you were not speaking meanly......most people just don't understand what a

family of a disabled individual goes through. I'm sure this family are doing

what they feel in their hearts is right for their daughter, whom they love very

much.

Again, no need to apologize....I'm sorry if >I< sounded angry.

Lori

Re: OT: Disabled girl's growth medically stunted

>> Do you not think that they have already tried to " cure " their

daughter...she is six years old!

> We have an 8 year old with cerebral palsy, caused by a brain injury

at birth. Not everything can be cured. Unfortunately.

**** Bless your heart, I am so sorry if I appeared to be

insensitive. I have no idea what that is like and have no place to

even open my mouth. >

> We have spent every penny we make, plus more, on treatments,

therapies, natural supplements. ..etc, etc, and almost every waking

moment...for 8 years.

> When the brain is badly injured....the body will follow. We will

keep our son at home with us for his entire life. He weighs 80 lbs

now, and is difficult to carry and lift, as he is tall also. I don't

know how I will manage when I am 70! and he weighs 180! Obviously we

will have to have help. I'm sure that is what this family is thinking

about. (How will we afford help? I don't know...as we have used up

all our savings, and we will not be able to save anything as we spend

it all on trying desparately to help our son)

>

> I'm not saying I would do the same as they have done, but they are

doing what they have to do to care for their child. At least they

want to keep her at home. Do you have any idea what the long term

care facilities are like for a young adult...adult with

physical/cognitive disabilities? ?

***** No I don't, and feel awfully for anyone in this situation.

>

> As far as a menstrual cup....you have obviously not spent any time

with someone with a physical disability. We have trouble even opening

our sons legs to clean him and get a fresh diaper on him and keep his

skin healthy. When the brain is injured it is quite common for the

muscles to become spastic and and the tendons shorten etc. She is

likely quite stiff.

> I am quite sure it would be physically impossible to insert one of

those cups into her vagina, safely and comfortably.

***** You are right, again things I didn't think of. I have used

mine safely, and introduced it to my oldest child - again no

experience with disabilities.

>

> I know you all mean well, but this is something that, unless you

have lived the life, it is very very difficult to understand.

***** Lori, I feel terrible. You are 1000% right and without

experience in this field I really should have minded my mouth. My

comments were knee jerk reactions, and in reflection, insensitive

ones at that. You are obviously a strong person, who cares deeply

for her child. I am a boob. I hope you'll accept my apology.

-- M.

[Guest guest]

>

there is no need to apologize!

**** maybe not, but I sure felt like a jerk when I was reading your

post. I am a bit fiery sometimes and simply do not think before

opening my trap.

merely trying to point out that a disabled person, has many

differences than an " able " person.....I know you were not speaking

meanly......most people just don't understand what a family of a

disabled individual goes through. I'm sure this family are doing what

they feel in their hearts is right for their daughter, whom they love

very much.

**** I know, and agree. I have had some " minor " issues with vax

damage etc... and it seems that since May, I have had my Inspector

Kluso hat on and can't take it off. I only meant to describe my

tireless personality of figuring stuff out - usually resulting in

analyzing symptoms to the degree of a gnat's ass, which at times is

pointless. As it might be if I were in the situation were one of my

children were disabled.

I'm sorry if >I< sounded angry.

**** Not at all, you just pointed out that it's important to see all

sides of the coin - which I clearly was not.

-- M.

[Guest guest]

Thank you for your profound testimony. I am so sorry that you or

anybody has to go through this. God bless you and your family. -Angie

On Thursday, November 2, 2006, at 08:31 AM, GENADIJ MAKAREWICZ wrote:

> OK...I have to say something here.

>

> Do you not think that they have already tried to " cure " their

> daughter...she is six years old!

> We have an 8 year old with cerebral palsy, caused by a brain injury at

> birth. Not everything can be cured. Unfortunately.

>

> We have spent every penny we make, plus more, on treatments,

> therapies, natural supplements...etc, etc, and almost every waking

> moment...for 8 years.

> When the brain is badly injured....the body will follow. We will keep

> our son at home with us for his entire life. He weighs 80 lbs now, and

> is difficult to carry and lift, as he is tall also. I don't know how I

> will manage when I am 70! and he weighs 180! Obviously we will have to

> have help. I'm sure that is what this family is thinking about. (How

> will we afford help? I don't know...as we have used up all our

> savings, and we will not be able to save anything as we spend it all

> on trying desparately to help our son)

>

> I'm not saying I would do the same as they have done, but they are

> doing what they have to do to care for their child. At least they want

> to keep her at home. Do you have any idea what the long term care

> facilities are like for a young adult...adult with physical/cognitive

> disabilities??

>

> As far as a menstrual cup....you have obviously not spent any time

> with someone with a physical disability. We have trouble even opening

> our sons legs to clean him and get a fresh diaper on him and keep his

> skin healthy. When the brain is injured it is quite common for the

> muscles to become spastic and and the tendons shorten etc. She is

> likely quite stiff.

> I am quite sure it would be physically impossible to insert one of

> those cups into her vagina, safely and comfortably.

>

> I know you all mean well, but this is something that, unless you have

> lived the life, it is very very difficult to understand.

>

> Lori

>

> >

> >

>

> I do see their point though. I cannot imagine

> > what it is like to care for a child that is totally helpless and in

> > a grown-up body. As parents in this situation age they lose strength

> > as well. A fully grown adult that is incapable of caring for

> > themselves is quite a feat when you are young, let alone when you

> > are getting older.

>

> ****** I see that too, but why are they not investigating the original

> cause? Not to impune their efforts, because I can't imagine being in

> their shoes at all... but what I do know, is that I am of the " have to

> get to the bottom of things " persuasion and I don't think I would have

> been satisfied with described diagnoses.

>

> > As far as the menustration thing goes, they could use something like

> > a menstrual cup or one of the disposable menstrual cups available

> > called Instead. Of course most people dont know about these

> > menstrual options which are much better for all females anyway.

>

> ******* Hello Diva Cup. No, most people don't know about them - no

> profit there.

>

> -- M.

>

>

[Guest guest]

>

>1b. Re: OT: Disabled girl's growth medically stunted

> Posted by: " GENADIJ MAKAREWICZ " mak5@... busylorim2

> Date: Thu Nov 2, 2006 5:34 am (PST)

>

>OK...I have to say something here.

>

>Do you not think that they have already tried to " cure " their daughter...she is

six years old!

>We have an 8 year old with cerebral palsy, caused by a brain injury at birth.

Not everything can be cured. Unfortunately.

>

>We have spent every penny we make, plus more, on treatments, therapies, natural

supplements...etc, etc, and almost every waking moment...for 8 years.

>When the brain is badly injured....the body will follow. We will keep our son

at home with us for his entire life. He weighs 80 lbs now, and is difficult to

carry and lift, as he is tall also. I don't know how I will manage when I am 70!

and he weighs 180! Obviously we will have to have help. I'm sure that is what

this family is thinking about. (How will we afford help? I don't know...as we

have used up all our savings, and we will not be able to save anything as we

spend it all on trying desparately to help our son)

>

>I'm not saying I would do the same as they have done, but they are doing what

they have to do to care for their child. At least they want to keep her at home.

Do you have any idea what the long term care facilities are like for a young

adult...adult with physical/cognitive disabilities??

>

>As far as a menstrual cup....you have obviously not spent any time with someone

with a physical disability. We have trouble even opening our sons legs to clean

him and get a fresh diaper on him and keep his skin healthy. When the brain is

injured it is quite common for the muscles to become spastic and and the tendons

shorten etc. She is likely quite stiff.

>I am quite sure it would be physically impossible to insert one of those cups

into her vagina, safely and comfortably.

>

>I know you all mean well, but this is something that, unless you have lived the

life, it is very very difficult to understand.

>

>Lori

Dear Lori,

Parents of severely disabled children deserve all our respect and support - and

HELP. If any of you know of a family with a severely disabled child, offer to

help them - they get very little downtime and not just anyone can 'babysit' a

severly disabled child. And pray for them for wisdom as they walk this path -

it can be very lonely.

I work with such families and design stimulation programs to help improve

function; often with very good results.

Our group is icando.org

It works on the principle of neuroplasticity - you can see that this is real -

go to stanford.edu and type in 'neuroplasticity' and you can see that you can

regrow pathways to and in the brain given the right stimulation.

But not always and it is hard work.

I've also trained in Jin Shin Jyutsu and KI which are energy methodologies that

helps greatly with some - it is kind of like accupuncture but you only use your

hands to help energy move through the body. http://www.jinshinjyutsu.us/ or

www.kinginstitute.org

Stimulation with the combination of hyperbaric oxygen therapy is helping many

individuals recover from brain injury - or at least improve to become more

functional. mild HBOT can help reduce spasticity wonderfully - I am working

with a severly brain injured little boy right now who has made tons of progress

- from fisted to open hands in 3 months time.

If you'd like more info, contact me off-list and I'll see what we can to do help

you.

Many and continued blessings,

Kay Ness - Atlanta