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APRIL IS NATIONAL ORGAN DONATION AWARENESS MONTH--GIVE THE GIFT OF LIFE--

WHAT IS THE DISEASE THAT KOLBY HAS F.S.G.S.
Focal Segmental Glomerulosclerosis is a kidney disease that causes inflammation to the glomeri “filters” of the kidney. The glomeri cleans the blood. When the glomeri is damaged this allows protein to leak into the urine, this is called proteinurina. Over time this leads to kidney failure which is called End Stage Renal Failure (ESRD). FSGS is the most common cause of complete kidney failure in children.
Kolby also has Steroid induced cataracts on both eyes that will some day need to be removed.

HAS KOLBY BEEN ON DIALYSIS ?
Kolby went into ESRF in 2003, Kolby had both of his kidneys removed. The first kidney was removed 9-11-03 & the second kidney was removed 1-12-04. Kolby started Peritoneal Dialysis (we did at home every night) 12-29-03.

KOLBY RECEIVED A KIDNEY TRANSPLANT ON FEBRUARY 3RD 2005
This kidney came from a 22 year old man his name was Rick Allan Peterson, he passed away February 2, 2005 from a heart ailment. We were BLESSED to be able to meet the family of Rick (THANKS to ARORA) This family is awesome, Rick was an amazing person. He loved kids and especially his nieces & nephews. We have kept in contact with his family and they have also started a Caring Bridge site in memory of him. If you would like to visit the site click here
Rick Allan Peterson's Page



Rick's family have beautiful journal entries on his site, stop by and leave a message in the guestbook and let them know how much we all care. God Bless Rick and his family for the GIFT OF LIFE they gave OUR Kolby.
Kolby had reoccurrence of the FSGS 6 hours after transplant. This caused his new kidney to go into ATN Shock ( asleep) for 4-5 weeks. Kolby’s disease is now in remission due to the grace of God and the wonderful Dr. B & the transplant team at Arkansas Children’s Hospital.

HOW LONG WILL THIS KIDNEY LAST FOR KOLBY
Well without reoccurrence of the disease 8-10 years is the average life of a cadaver kidney. With reoccurrence we do not know how long it will last. Many years God willing.

THIS IS A QUESTION I AM SURE EVERYONE HAS WONDERED ABOUT
WHY DIDN`T KEVIN OR I DONATE A KIDNEY TO KOLBY
This is a tough one for Kevin & I, we wanted to donate to him more than anything. I am sure that every parent would want to donate an organ to their child if their child was in need. Well with Kolby’s disease they did not want Kevin or myself to donate to Kolby. There is not enough known about this life-threatening disease. It could be that Kevin or I have a gene that gave this to Kolby. If we were to donate it would make the chance of reoccurrence of the disease higher. We are praying that with the help of NephCure in 10 years Kevin or I will be able to donate to Kolby. With research that is being done everyday, soon they will know what causes this disease and how to cure it.
~APRIL IS NATIONAL ORGAN DONATION AWARENESS MONTH PLEASE REGISTER TO GIVE THE GIFT OF LIFE~




KOLBY’S DAILY MEDICATIONS ARE
Prograf (FK506), Prednisone, Myfortic these are his anti-rejection drugs he will always be on, then his blood pressure meds are Atenolol, Norvasc, & Cozaar. He takes Prevacid and then Advair for his coughing.




We would like to encourage you to visit the
Give Life store.

All commission money earned in the store is used to send free gifts to caringbridge children.

Kolby has recently received a free t-shirt and we love it - photos to follow soon!

All of the items can be changed around and personalized for you at no extra charge.

Kolby is also featured in the 2006 calendar now on sale in the store.

He is even featured on the FRONT COVER to represent all of the fighters int he calendar!

We are so proud of our Littlest Fighter

Please support this year's fundraising efforts if you are able to!

Just click the banner below.








KOLBY & OUR FAMILY ARE INVOLVED IN MANY FOUNDATIONS
Kolby is an Ambassador at the Arkansas Children's Hospital, we attend fundraising events for the hospital and tell Kolby's amazing story. We also help the NephCure Foundation by collecting used cell phones and ink cartridges to raise money for research for a cure and treatment for FSGS. With the help of the Northside Rotary, we started in 2006 the Northside Rotary Foundation, Walk for KIDNEY SAKE, an annual kidney walk in the fall to benefit Arkansas Children's Hospital Kidney program, Kidney research, & to help with emergency funds for kidney patients throughout "our" state. To learn more about the walk visit www.northsiderotary.org Last year at the walk in Fayetteville we had a team for Kolby, the Kolby's Kourage Team was 200 friends and family walking to raise money for the foundation to educate Arkansans about kidney disease and for research for kidney disease. God has blessed our Kolby with Remission and now we feel it is our place to help others suffering from kidney disease

TO MY SWEET KOLBY

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.
Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles..
Just for this afternoon I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I willbuy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will let you help me bake cookies and I won't stand over you trying to fix them.
Just for this afternoon, I will take us to McDonald's and buy u both a Happy Meal so you can have both toys..
Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.
Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.
And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will THANK God for you, and ask him for nothing, except one more day..............

author unknown.......



Journal

Sunday, February 15, 2009 8:11 PM CST

Hello, well Kolby will go to ACH on March 18th to have his tonsils & adenoids removed, he will stay in the hospital for a few days just due to the fact the he is a transplant patient. He had a hearing test & we found out that he has some hearing loss due to his medications, so we will test this every 3 months to see how fast he is losing the hearing. Steffin turned 16 on the 9th. So he is now driving. WE are starting to work on the kidney walk for 2009. Also please check out Leighton's site he just received a heart transplant at Arkansas Children's Hospital http://www.caringbridge.org/visit/leightonharper
They need our prayers.
Love to you
Steph

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Hospital Information:

Arkansas Childrens Hospital

Little Rock AR. 72202
479-409-2916

Links:

http://www.nephcure.org   Kolby's Disease Website
http://www.angelfire.com/ar3/kolbyeiland   More Pictures of Kolby
http://www.caringbridge.org/fl/tehlebracht   This is Travis' site, he is 11 years old and suffers from FSGS


 
 

E-mail Author: stephaniedawnn@hughes.net

 
 

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.
 
 
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