National Superhero Day #ytcHero

National Superhero Day  #ytcHero
April 28 2014
 Love this quote, but there are several variations.
"The object of lifes journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting, Holy Sh**, What a Ride!!!" — Mavis Leyrer, Seattle
also
""Life should NOT be a journey to the grave with the intention of
arriving safely in an attractive and well preserved body, but rather to
skid in sideways, Champagne in one hand - strawberries in the
other, body thoroughly used up, totally worn out and screaming
'Holy sh** - What a Ride!'" — Mavis Leyrer (octogenarian)

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!’”
It was said by the man — Hunter S. Thompson 1966
whichever??

“We've got some difficult days ahead. But it doesn't matter with me now. Because I've been to the mountaintop. And I don't mind. Like anybody, I would like to live a long life. Longevity has its place. But I'm not concerned about that now. I just want to do God's will.” ~Martin Luther King, Jr

My Superhero pose!!

A friend came to visit and took my for a ride on their bike. Had a Great time!!
Friends help make a difficult journey easier!!

love dek
#CongentialHeartDefects,#MultipleCongenitalAnomalies,

Heart Defect Research Quilt Mar 5 2014

Hello, March 5, 2014
WOW!! When I started the Heart Defect Research Fund, I expected it would really be like a "raffle", 100 people might give $5 or $10. But for Family, and Friends to gift more, WOW!! I am truly Blessed!!
I am almost to the goal of $1,000, in under a month.
After someone told me, they withdrew some of their monies in their account, of the $400, the amount in the checking account only was $364. The funding source, admits to a 5% fee, plus 2.9 % and $ .30 processing fees, but it was in reality, more like 12% fee. I haven't inputted the Cash on hand, not sure if it would be charged fees also. So I am in reality over my goal amount.
I have emailed both places for information on gifting, and haven't heard back. :(
I need to resend those emails.

The Quilt is almost complete. I had issues with how the binding turned under, over the Rod Pocket, and ripped it out, and resewed it, But I have the hand sewing half done.

WA LA, Rod pocket sticking out on the top, and Binding all stitched on.

The Label I stitched out with the machine, I thought came out well.
I need to hand stitch down the binding and rod pocket.

label stitched out with machine

THANK YOU ALL WHO HAVE SUPPORTED ME!!
http://www.gofundme.com/6psk18
WOW!!!
IT IS OVER!!
Love Diane

Heart Defect Research Quilt Feb 19 2014

Hello, Feb 19 2014
I worked hard on the Quilt today. I stitched around all of the 89 little pieces.
Sorry I took 4 pictures, 2 with the flash, and two without, none are really that good. I had hoped at least one would show the stitching a bit better.

Quilting around all the 89 little pieces

Maybe  if you click on it, and make it full size. It is AWESOME!!
The picture from the front, you can see the puffy ness around each piece.
Tomorrow and Friday I will work on the echo- stitching around the shape of the heart.

Heart Defect Research Quilt

Don't forget if you donate to my Heart Defect Research Fund, you have a chance on winning the quilt.
http://www.gofundme.com/6psk18

Thank You
love diane

Hello, Feb 13 2014,
Heart Defect Awareness Week is almost finished. St Valentine's Day is tomorrow.
We were supposed to get our Groceries today, but the weather didn't cooperate.
So I spent the time working on the Quilt. First, I taped down the Backing, then the Batting, and then the Quilt top.
Then I Pin Basted the Quilt. You are supposed to PIN it about every 5" apart. But I was worried about holes showing in the center square.  I then had to move the other Pin Basted Quilt over to the pile of TO DO Items.
Monday I will start the Stitching of the layers together. Free-Hand Quilting.

Pin Basted

Sorry it wasn't the best shot. I couldn't lift the camera up any higher. ::)
Love ya
Don't forget if you donate to my Heart Defect Research fundraiser this can be yours.
http://www.gofundme.com/6psk18
THANK YOU!!
Diane

Hello  Feb 12 2014
I posted this yesterday as a PS on the other days post.::
Well, the backing part today wasn't going  so well. Plan C. Pictures later. Pooped out.
This is who i will contact about the donation.
https://givetochildrens.org/Ways-to-Give/Direct-Your-Gift/Research
THANK YOU !!

TODAY ::
I ended up going with PLAN E. This is what I was going with yesterday, and it wasn't working. I guess, my mind was not functioning in QUILT mode. As I laid there this morning, UH HA, a Revelation came to me.

DUH!!

I was thinking, NOT Clearly, I would sew the 2 sections together, and then do a Diagonal in the middle. I got to that point, and was looking at the 4 seam allowances, and it was   NOT GOING TO WORK,  at least, not for me.
The quilt turned out a bit bigger than planned, 35 by 35.5, not 32.
The pieces I had, were either Fat quarters ( 18 by 22), Half yards ( 18 by 44) or full yards. The ones I had that were full yards, were the Joann Fabrics ones, and one that was mostly white with no hearts on it. The ones from Joann's, were a bit BUSY, but I had to use them. I also had one from Joann's that said, Faith, Hope, and Charity on it, I think it was a BC one. But at least it had hearts !! ( needed lots for the feathered heart, I didn't want the same pieces too close together)

The bigger ones I cut a 20 by 20 and the smaller one I cut 18 by 18, and, well, no good.
This morning, I took the large Moda Marbles Dark Hot Pink, it was barely 34 by 40. I only needed a little more. Yesterday, it got to the point, I DID NOT want to piece the backing, Especially down the center, and have it behind the large Feathered heart. Or only add a small 3" piece onto one side, and look lopsided. SO  I cut 3 -2.5 " strips to use in the border, off of the Hot Pink. Then got JACK ( the ripper) and took apart the seams on half of the above. Chopped off 2- 5" strips and sewed those to each side of the large Hot Pink, now about 28 by 37.
WALA!!

Backing of the quilt !!

WHEW!! By then it was 1pm, ( Home alone) and pooped.
Nappy time, tomorrow or the next day, I will work on pinning the layers together.

http://www.gofundme.com/6psk18

Love DEK

What would the difference be??

Sept 30 2013
Through the years, i have slowly been finding out more and more about ME.
Once in doing a search i found this list::
http://www.nlm.nih.gov/archive/20061212/mesh/jablonski/syndrome_toc/toc_a.html
Multiple congenital anomalies. WOW!! SO many?
Why not a list without those with Mental retardation syndromes too?
Recently, in doing some research i found another type of list, Multiple Chronic Conditions!
http://cmcd.sph.umich.edu/managing-multiple-chronic-conditions.html
WHAT WOULD THE DIFFERENCE be between the two??
Congenital VS Acquired?
This has some ideas::
 http://www.hhs.gov/ash/initiatives/mcc/index.html
"pose a significant and increasing burden on the health of Americans"

"" Chronic conditions are conditions that last a year or more and require ongoing medical attention and/or limit activities of daily living.^3""

^{"concurrent chronic conditions""
Well, they both sound VERY alike to me!
Ok, Diabetes, Cancer, Alzheimer's, Arthritis, Osteoporosis, Heart Disease for a few.
As opposed to, Heart Defects, Lung Defects, Osteopenia, Pulmonary Arterial Hypertension, Hemi-Vertebrae Scoliosis.
Drugs that are $6,000 a month.
HMMM??
I was told
"}The difference is that "chronic" conditions may exist at the time of birth but they may also acquired later in life. So, a congenital condition may be considered a chronic disease but not all chronic diseases are congenital.^{" 
SMH!
Sounds to me like, More of them, so they are funded.
Hospital systems should have Departments for those with MCA! The PCP has a hard time keeping up with ALL of our issues.}