PRAISE THE LORD!!!!!

YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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AFTER 8 YEARS of working with an attorney and hard work.....

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I FINALLY GOT APPROVED FOR DISABILITY!!!!

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WITH BACK PAY!!!!!!

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It took the judge 14 months to FINALLY approve it after my 3rd hearing!! We were about to contact the head judge this week if we didn't hear a decision.

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I had heard a preacher tell us that we have an angel that is with us all the time and that we are able to send that angel to do things.. So two days ago I said, Angel, GO over to that judge and wake him up and make him realize what he is doing and get him to approve my disability!!! AND today I get my Partial Approval letter!!!! Its only partial because apparently I said I was disabled since 1994 ( I dont remember. lol) but filed in 2001. I will contact SSI tomorrow to set up the bank account.

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Oh I can't wait... Neither can my attorney's. lol They get 25%!! I am or am one of their LONGEST clients. We are going out to lunch to celebrate!! lol

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PRAISE THE LORD for my angel and answered prayer!!!

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Thanks for all YOUR PRAYERS also!!!

It's almost time for CAMP WONDER!!

Adam and Noah are SOOOO EXCITED because its ALMOST time for Camp Wonder!! Only 18 more days til they go!! We went and bought some of the the stuff they need yesterday at dollar store and Big Lots like chap stick, containers for shampoo/body wash, deodorant etc. I still need to hit the thrift stores and find Adam some turtleneck shirts since that's ALL he will wear and he only has ONE!! lol I don't think the counselors will appreciate him wearing the same shirt all week!! Right guys?

Camp Wonder is an AWESOME camp for kids with fatal skin diseases. A place for them to go and have fun and do things other kids can do without being teased, stared at or critized. They go to the resevior, swimming, rockwall climbing, rope course, baseball, at night they have casino nights, dances, pirate night, campfires, and LOTSSSSSSSS MORE!! The camp is free to the campers and their families because of all the expenses the families put out on medical bills and such. The camp is run by donors who send in donations and sponsor kids and volunteers.There are nurses and doctors there all week to help the campers along with lots of volunteers who are counselors to make sure the kids have LOTSSSSSSS of FUN and MORE FUN!! Their website is at www.csdf.org or you can go to this site and click on the video links on the right and SEE the fun the kids have http://csdf.org/support-csdf/camp-wonder-video.html. You will see my youngest (Noah) in A LOT of these videos. He is my lil red head.He is known as the "Camp Flirt" lol. I saw Adam in a few. Noah's friend Emilio is in them also. HI Emilio!!! Check out the video and see what the kids have to say about Camp Wonder!! I know the day we leave Camp Wonder, my boys are COUNTING the days til next yrs camp!!

If you know of any kids from 7 yrs and up that have a skin disease then have them contact the Childrens Skin Disease Foundation www.csdf.org and ask them about Camp Wonder. Tell Gina Marie (Adam and Noah's Mom) sent you. :o) Also if you would like to help out the kids that go to Camp Wonder, you can contact the foundation and ask how you can help. They can use all the help you can give, financially mostly. Let's help give these kids some fun this summer!!

It's Memorial Day!!

Lets remember those who have lost someone fighting for our country and our freedom!! Lets pray for those still fighting and those who have fought and are now home and dealing with the what they have been thru.
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It's not just a day to have picnics and fun with the families but a day to remember and pray for those putting THEIR lives on the line AND GIVING for OURS and those who ALREADY HAVE!!

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Lord, I ask you to bless these families and give them strength, peace, comfort during these times and not just today but everyday. Walk with them Lord. Wrap your loving arms around them and fill them with your love.
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Lord also protect those who are being held captive or prisoner. Give them comfort and a peace also. Help them to become free if its in your will.
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Lord also touch those who are now out there fighting for our freedom and are out there on the lines. Keep your hand on them and be with them. Let them be a light to others. Lord we thank you for all you are doing and are going to do. We praise you Lord in all things.In JESUS name we pray. Amen


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I hope you all remembered to put sunblock on if you were out having fun with your families today outside.
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Blessings,
Gina Marie and boys

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© 2000 George P.
Crofton

Praise Him!!

I have been so blessed lately even more than usual because the Lord is ALWAYS blessing me. Each day I live is a blessing. :o)
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My new van has been a HUGE blessing!! I can't believe I've put 3,000 miles on it already and haven't even had it 2 months!! YIKES! lol But as my brother says, At least we don't have to worry about me breaking down anywhere especially on trips. Thank you Jesus!! I even got my oil changed already.
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Then in April I was elected to be Chairperson for our CAC thru our county SELPA. Its thru our County Special Ed dept. I knew with my disability's and also disorganization I had to fix somethings and I NEEDED a desk to help get some things in order and keep track of stuff. But knew I didn't have it in my budget. BUT I prayed!! God hears our prayers. Saturday I was in the office here at the club and was just looking at their computer desks and there was two and they were slightly different. I was comparing the two. I figured one of them was like the one I would need or would work. Then Saturday night I was driving home with Adam and Noah and there on the side of the road was a computer desk and two bikes that said FREE!!! We got out and checked it out and the desk was in pretty good shape. The keyboard shelf would fall when pulled out but the cabinet doors shut great and it wasn't to scratched up. It was also still sturdy and not falling apart. BUT I didn't think I could get it in my minivan ESPECIALLY having two boys in there already and my walker.. I tried calling a few people but no one was up. I had to go home and prayed I could get that desk..
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My brother came over the next morning to fix our swamp cooler (THANK YOU JESUS)! It was suppose to be 106 on Sunday. He has a Toyota so I knew it wouldn't fit in his car. He was going to do my weed eating also but he ran out of string right after he started.. :o( By the time he left, I had enough time to get showered and get ready for church.
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Sunday night after my older boys were home, I went to go check out and see if the desk happen to still be there.. I kinda doubted it but prayed.. I drove by and THOUGHT I saw it so I did a u-turn.. I then didn't see it.. I decided to go into town even tho it was 11 pm and get me something to eat and drink. I kept telling the Lord how I NEEDED that desk or A DESK. All the way into town I kept looking for another desk.
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I stopped at 7-11 and got me a tea and donuts and headed back home since I had only had 3 hrs sleep... I kept checking the road and when I got near where the desk HAD been I drove slow again... IT WAS THERE!!!!!!!!!! I pulled right over!!! With killing my back I got it in my van by laying the seats down. I brought it home and Nathan helped get it in the house! Last night I got it all set up and my computer and my back/leg are happier to not have to sit sideways on recliner to use computer. :o) Thank you Jesus!!
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God also provided an extra financial blessing to help hold me this month. :o) He knows our needs and supplies our needs. Not always our WANTS but DOES supply our NEEDS.. It's just in HIS timing and not always OUR timing!! lol
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God is always working in our lives even when we don't know it. We don't know how many times he may have saved our lives and we didn't even know it. Maybe he had stopped a car from hitting us or someone from attacking us and we didn't even know because Him and his angels are always watching over us.
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God says if we don't praise him the rocks will cry out. I love to praise him!! He gives me breath and life and JOY!!
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Psalm 150:6 Let everything that hath breath, Praise the Lord. Praise ye the Lord!!

Disability Rights Action Alert for May 13 National Call Day

Disability rights groups have called a National Call-In Day for tomorrow, May 13. It's in support of the Senate Finance Committee's report on health care reform, released only yesterday.

This report offers major support for our children with disabilities. It expands the medicaid waiver programs, designed to provide the supports needed to keep our kids home with their families, eliminates the waiver program waiting lists that plague many states, eases the medical requirements for entry into the medicaid waiver programs, and increases the FMAP (Federal matching funds) by 1%.

There are other benefits for our kids, but these are the ones that, as a parent, give me the most hope for my daughter's future.

The May 13 National Call-In to the Senate has been announced by the Consortium for Citizens with Disabilities. Disability rights groups around the country are spreading the news. The CCD has even provided an example script for call-ins, but if we are going to call as the parents of children with disabilities (and I think we need our voices heard), the script needs to be altered a bit.

Here is the entire report that was released yesterday.

The section on long-term care and the Medicaid HCBS (Home and Community Based Supports) waiver programs begins on page 49.

Please participate in tomorrow's call-in. It could have a tremendous impact on our children's future.

The procedure for tomorrow is:

When: Wednesday, May 13 (Between 8AM and 6PM EDT)
Call-In Number: 1-866-459-9232 (Toll Free)

You will be asked which state you are calling from and will be connected to your Senators’ offices.



Here is the sample script being distributed via the CCD:

Hello (state your name and where you are calling from).

I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.




You might want to think about this as an alternative, to reflect our role in the discussions:

Hello my names is {...} and I'm calling from {city} in {state}.

I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. I'm the {mother,father,grandmother,etc} of a child with disabilities, and these long-term services and supports are essential to {his/her} civil right to remain with {his/her} family. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.



Here is the list of US senators, and you can sort it by state. http://www.senate.gov/general/contact_information/senators_cfm.cfm

Remember, it's best if you call rather than emailing or using their form online. Priority in the senate offices is always given to telephone calls, and you can use the toll free number I listed above to then get transfered to your senator's office.

(both men & women, sons & daughters -
Need to read this)

BEING A MOTHER...

After 17 years of marriage, my wife wanted me to
take another woman out to dinner and a movie. She
said, 'I love you, but I know this other woman loves
you and would love to spend some time with you.'
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The other woman that my wife wanted me to visit
was my MOTHER, who has been alone for 20 years,
but the demands of my work and my two boys had
made it possible to visit her only occasionally.
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That night I called to invite her to go out for
dinner and a movie.
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'What's wrong, aren't you well,' she asked?
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My mother is the type of woman who suspects that a
late night call or a surprise invitation is a sign
of bad news.
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'I thought it would be pleasant to spend some
time with you,' I responded. 'Just the two of us.'
She thought about it for a moment, and then said,
'I would like that very much.'
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That Friday after work, as I drove over to pick her up I was a bit nervous. When I arrived at her
house, I noticed that she, too, seemed to be nervous
about our date. She waited in by door. She had curled her hair and was wearing the dress that she had worn to celebrate her last
birthday on November 19th.
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She smiled from a face that was as radiant as an
angels. 'I told my friends that I was going to go
out with my son, and they were impressed,' she said,
as she got into that new white van. 'They can't wait to hear about our date'.
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We went to a restaurant that, although not
elegant, was very nice and cozy. My mother took my
arm as if she were the First Lady. After we sat
down, I had to read the menu. Her eyes could only
read large print. Half way through the entries, I
lifted my eyes and saw Mom sitting there staring at
me. A nostalgic smile was on her lips. 'It was I
who used to have to read the menu when you were
small,' she said. 'Then it's time that you relax and
let me return the favor,' I responded.
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During the dinner, we had an agreeable
conversation-nothing extraordinary but catching up
on recent events of each other's life. We talked so
much that we missed the movie.
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As we arrived at her house later, she said, 'I'll
go out with you again, but only if you let me invite
you.' I agreed.
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'How was your dinner date ?' asked my wife when I
got home.
'Very nice. Much more so than I could have imagined,' I answered.
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A few days later, my mother died of a massive
heart attack. It happened so suddenly that I didn't
have a chance to do anything for her.
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Some time later, I received an envelope with a
copy of a restaurant receipt from the same place
mother and I had dined. An attached note said: 'I
paid this bill in advance. I wasn't sure that I
could be there; but nevertheless, I paid for two
plates - one for you and the other for your wife.
You will never know what that night meant for me. I
love you, son.'
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At that moment, I understood the importance of
saying in time: 'I LOVE YOU' and to give our loved
ones the time that they deserve. Nothing in life is
more important than your family. Give them the time
they deserve, because these things cannot be put off
till 'some other time.'
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Somebody said it takes about 6 weeks to get back
to normal after you've had a baby.... somebody
doesn't know that once you're a mother, 'normal' is history.
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Somebody said you learn how to be a mother by
instinct... somebody never took a three-year-old shopping.
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Somebody said being a mother is boring....
somebody never rode in a car driven by a teenager with a driver's permit. Somebody said if you're a' good' mother,
your child will 'turn out good'....
somebody thinks a child comes with
directions and a guarantee.
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Somebody said you don't need an education to be a
mother.... somebody never helped a fourth grader
with his math.
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Somebody said you can't love the second child as
much as you love the first.... somebody doesn't have two children.
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Somebody said the hardest part of being a mother
is labor and delivery....
somebody never watched her 'baby' get on the bus
for the first day of kindergarten .
or on a plane headed for military 'boot camp.'
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Somebody said a mother can stop worrying after her
child gets married.....somebody doesn't know that
marriage adds a new son or daughter-in-law to a
mother's heartstrings.
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Somebody said a mother's job is done when her last
child leaves home....somebody never had
grandchildren.
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Somebody said your mother knows you love her, so
you don't need to tell her.... somebody isn't a
mother.
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Pass this along to all the 'mothers' in your life
And to everyone who ever had a mother. This isn't
just about being a mother; it's about appreciating
The people in your life while you have them....no matter who that person

SWINE FLU/ Childhood Cancer?

A man named Mr. Alfriend posted this a couple days ago. How sick does this make you?
The Swine Flu : A Crisis
It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly. Here is what has happened already:
Over 100 schools have closed.
President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."
Congress approved $1.5 billion in emergency funds.
Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."
The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.
WHO Director-General Margaret Chan has raised the alert level to phase 4.
Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.
Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We're working together at 100 miles an hour."
Congress has asked Homeland Security to consider closing the Mexican border.
Here are the numbers: There have been 84 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues.
Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.
This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. So please understand what I am about to say. I in no way wish to belittle those who have suffered from the swine flu.

I would just like to point out some comparisons.
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1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.
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2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently refers to the 40,000 children currently with cancer, and the 2,500 annual deaths, as "very rare".
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3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.
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4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. And again and again and again. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were wrong.
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5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.
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6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people, that is $18 million per person. Childhood cancer receives a TOTAL of $30 million. That works out to $750 for each child currently fighting cancer.
So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu had be great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none.
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Some might say these are not a fair comparisons. Well, in one way they would be correct. The $1.5 million for the flu has been paid. The $30 million for childhood cancer was approved, but has never funded. Other issues of greater importance keep taking priority, such as $120 million to distribute free condoms in 3rd world countries (Yes, really. It's in the stimulus package).
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I am not criticizing the response to the Swine Flu. It fact, I believe it is an appropriate response. I just do not understand why our children with cancer deserve less.

Please remember:

~1 in 300 children will be diagnosed with cancer before the age of 20.

~12,600 children are diagnosed each year.

~3,000 will die of cancer each year.

~Cancer is the #1 disease killer of children ages 1-19.

~The cause of most childhood cancers is still unknown.

~Only 3% of cancer research money goes toward childhood cancers.

~There are currently 30,000-40,000 children fighting cancer in the U.S.

~The number of children diagnosed with cancer has increased every year for the past 25 years.

~Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from cancer.

~In the past 35 years ONLY ONE new cancer drug has been approved for pediatric use.

~Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers.

~For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.

~Teenagers have the highest cancer fatality rate of any age group under 80. Their cancers tend to be much more rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.
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~A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials."
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Please, please raise childhood cancer awareness. Please check this website out: www.RALLYROUNDTHEGOLDRIBBON.org.
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Please pray for Brandon and Corey. They need your urgent prayers. Brandon needs a miracle and Corey has NB and has relapsed for the 2nd time. Please pray that Trey has no complications from the antibody study. Please pray that it works.
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Do you ask yourself why??? Because not enough people are standing up for our children..Please support childhood Cancer....research awareness and I hope WEAR your GOLD. GOLD stands for childhood cancer. Get a gold ribbon!