This letter was sent to me and I want to share it so

people can see why we must fight.

To Whom It May Concern:

As I sit here tonight writing this e-mail I feel as if

I have fought a good, long fight for Kaleb

in the last 67 months.

But I and my husband are human, we are weary,

tired, and at the end of our rope.

It has been 67 months of having to push and

fight for anything that Kaleb has needed

even down to being cared for by men

and women who have taken an oath to

care for and render treatment to the patients that

they see!

Oh November the 4th kaleb finally was granted

nursing help from the State.

I was so happy that help had finally came!

I was told that he would receive 42 hours a week of RN

services. In November Kaleb recieved 12 days

of care! In December he was given 14 days!

And this month he has had 5 days!

Today was one of those 5 days!

The RN would have worked her 2nd time

with Kaleb. Her first day she was

competent and ver earger to help him!

Today she was so drugged that she was

falling into the walls, she could not keep

her eye's open, and had very slurred speech.

I waited on her supervisor until 2:00pm to come

to my home to see for herself what condition the

nurse was in (by the way she still has not arrived)

Kaleb's aid came in at that time and told her to go

ahead and leave! She called herself and reported

the nurse!

Then when I was called I was told that I would

not have a nurse but 1-2 days per week until they

could find Kaleb someone and that this

nurse was being reassigned to another patient!

I had given him his shower and dressed

him for the day, I had gave all his feed's,

I had turned and suctioned, I had rendered

all his care while his RN sat like a zombie!

Is she going to care for someone you know

tomorrow, maybe even you?

I no longer want to hear someone's opinion of

what they think we should do!

I no longer want to hear them say be patient as

they are really trying to assist us in caring

for Kaleb!

67 months ago we entered this "wonderfull" world

of disability, when we first started this

journey we had family and friends that were on

this walk with us. Not far down this

road we looked around and we were truly

alone.

When the weeks turned to months and then

to years the calls were fewer, the visit's even less!

For 67 months we have prayed for a miracle

and accepted those stares of

"Oh poor you."

Kaleb has never been a burden, we have loved

him thru it all. The chain all the way to the

top that has failed Kaleb and all families

like him!

After contacting Jim DeMint and others over

a year ago I am still waiting on

Medicaid approval for a heart surgery that

he will have to have. I waited 1 1/2 years

for him to be approved and just fitted (yeasterday)

for a wheel chair that he needs so despratley

since his current one is 5 years old and was

fitted for him when he was 3 years old

and only weighted 23lbs. He only

weighs 62lbs now.

And some of you may say well you get a

check for him! Yes, I do.

$564.00 per month, which has to buy

his food, pull-ups, soaps, lotions, pedisure

($10.99 per 6 pack), Tylenol, Clothes,

bed linens, and anything else that may be needed.

Some even say I care for him for his money..

HA HA...before I quit my job to care for Kaleb

in 1998 my bring home pay was $630.00 per week.

Does that sound like a good trade to any of you?

My light bill which should run no more than $150.00

per month has been as high as $325.00 some

months.

My life of leisure now includes at least one load

a day of bed linens and pads that must be

washed! I may go to sleep some nights by 1:00am

only to jump up to check the alarms at

least 4-5 times before the 5:30am alarm

goes off! And also keep in mind that

Kaleb has no bed sores or skin break down in

67 months, only due to being repositioned every

2 hours and his brief changed!

Yes we are tired!

If you roughly figure my pay for the last

1876 days it is...$.74 per hour (that is if I

did not even spend a dime on him!)

I don't think I would do this job willing for the

money do you?

I have not been out to eat with my

husband in years! I have not slept late in 67 months!

I have not spent one day in 67 months that I can

remember that I have not heard a

 machine alarm! (usually several times an hour)

I have 5 other grandchildren, 3 that would not

even know me in a crowd! So why are we doing

this you might say?

Love...undying, unconditional, unbroken!

Just and only LOVE!

We are just one small glimpse of the big

picture. In every State, every Town in this the

good OL' USA, the land of the free,

The Nation that spends billions to "better"

the lives of people in other countries, look

in your neighborhood and you will find us.

The families because of a bad birth, a

birth defect, a disease, an accidental chocking,

drowning, Stroke, or MVA we fight everyday

for someone that we love to be cared

for with respect, compassion and dignity. And

the scary thing now for you to think about

in one split second you could become ME!

May God Richly Bless You,

Pamela Gregg AKA: Kaleb's Nena