THE KNOPF FAMILY

Thursday, January 17, 2008

Wednesday, January 16, 2008

http://cfhusband.blogspot.com/
I usually don't pass things along, but this family has touched my heart with their story: They really have a long battle ahead. The baby is a tiny, tiny preemie and the mom has Cystic Fibrosis and is in need of a lung transplant. The Dad needs all the support and prayers we can send his way.

Monday, January 14, 2008

Snow Day...

We woke up this morning to 8 inches of heavy wet snow and NO POWER! Ok... I can deal with the snow day and having the kids home.... but NO POWER???? If that is someone's idea of a joke, its a sick one!

Thank God for the Gameboys... I silently prayed all morning for the batteries to last. It sounded like a video arcade in here but at least everyone was busy. Nothing like being stuck inside with 3 kids with PWS... 3 kids who obsess and worry about every little thing.

David asked me no less than 150,000 times if his basketball coach had e-mailed about today's game... ummmm there is NO POWER!!! How would I know that??

Ben sat near the window and asked me 150,000 times when the plow truck was going to come plow the driveway, and what color the truck was going to be, and who would be driving the truck, and why? ummmm... my ESP is not working this morning.... Did I mention there is NO POWER??

Caroline went to her room at least 150,000 times and turned her light switch on and off and then came and reported to me that her switch wasn't working!!! ummmmm..... THERE IS NO POWER!!! ( anyone seeing a pattern to all this yet??)

Jake woke up at 9:15 and wanted to know why the bathroom lights don't turn on..... sigh... There is NO POWER!!!!

I survived all of this with no coffee because THERE WAS NO POWER!!!! I actually contimplated going out in a snow storm to go to the coffee shop... I didn't go, but I did give it some serious thought!!

Finally at 1:30 the power finaly came back on!! 7 hours with no power and 3 kids with PWS are not a good combination, but we survived and I finally got a cup of coffee!

Now to survive the piles of wet boots, snowpants, gloves etc.

Thursday, December 27, 2007

Merry, Merry Christmas!

Thought I'd just let the pictures do the talking... enjoy!!

Aric opening his ipod

Ben trying on his catchers mask

Ben in all his catchers gear trying out his new glove

Too Cool Ben and his Catchers Gear

Caroline and her new baby.

Ben getting too excited about his new NY Yankee's Sneakers

Introducing Olivia Grace.. new daughter to our Dear Friends Adam and Sarah.

What a wonderful Christmas Present for Adam and Sarah!!

Congratulations Adam, Sarah and Kyle!! Welcome Sweet Baby Olivia!!!

Our Journey With Prader-Willi Syndrome

Our journey with Prader-Willi Syndrome started on December 1, 1994 when our son David was born.
David is our 4th child. We had no idea that our world was about to change forever, that nothing would ever be the same... or what that would even mean...
"Your baby has Prader-Willi Syndrome"
The words seemed to float around the room, like they weren't really meant for me to hear. This couldn't be possible because we already had 3 healthy boys. I had prooved 3 times over that I could make healthy babies! That's what it was... a mistake... they had made a terrible mistake... they were talking about somebody elses baby, not mine. I didn't hear what they were saying... these words weren't meant for me. I looked at my husband who was holding David and he had tears rolling down his face, but he was in control, he asked the questions, he was crying... I'd never seen him cry, not like this anyway. I was just sitting there like a silent observer to this scene. I didn't belong here, this wasn't my life. We were taking our baby home today and they were wrong. I would proove it to them. We walk back to the NICU with David to pack his things from his 10 day stay. His nurse gave me a hug and I collapsed to my knees on the NICU floor sobbing... It hit me like a ton of bricks.. I am the mother of a baby with special needs. Some syndrome called Prader-Willi... not sure how we are going to do this, we pack our baby and head for home.
The firt couple of years were a blur. David was sickly and we were in and out of the hospital with illness and surgeries. There was endless physical and occupational therapy, it took forever to feed him.. he had an NG tube for almost a year and was on oxygen until he was 3. Jacob was born 13 months after David and we were busier than we ever thought we could be. We had 5 little boys and life was good. But we both had this feeling that something, or someone was missing. Then we are told of a baby who has PWS and was in need of a family and we both knew immediately that this is what we wanted to do. So in September of 1999, Ben joined our family at the age of 5 months. He stole our hearts and life was good. We were busy raising 6 boys, everyone thought we were either saints or just plain crazy for adopting a child with PWS when we already had a child with it. Life was good, Life was busy, we wouldn't change a thing.... but something or someone was missing.
In May of 2001 I was put in contact with a family who had a baby girl with PWS. They were making an adoption plan for her and long story short, Caroline Grace Elise came to live with us when she was 7 weeks old. We all fell completely head over heals in love with this baby girl! She was the missing piece to our family. Life is good, life is busy.. Our family is complete.
7 kids, 3 with Prader-Willi Syndrome, maybe we are Saints, maybe we are crazy, maybe we're a little of both! Either way, life is good, and we wouldn't change a thing.

THE KNOPF FAMILY

Thursday, January 17, 2008

The MOM Song...

Wednesday, January 16, 2008

Say a Prayer for this Family

Monday, January 14, 2008

Snow Day...

Thursday, December 27, 2007

Merry, Merry Christmas!

Our Journey With Prader-Willi Syndrome

Blog Archive

Followers

FEEDJIT Live Traffic Feed

About Me

Visit our Photo Album on-line!

OUR VISITORS