Born: August 17, 1999
Illness: Juvenile Rheumatoid Arthritis, Reflex Sympathetic Dystrophy, Uveitis
Quilt Deadline: March 1, 2011
Theme of Quilt: The Color Purple
To stitch a square for Love Quilts you will need to join the yahoo groups to see the listing of patterns that are already being stitched. It is an open group so you can sign up easily and view the patterns right away. Once you are a member you wont have to sign up again, just sign in and to make it easier yahoo allows you to stay signed in for 2 weeks at a time! Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern of your own that you want to stitch and have confirmed it is not already being stitched by viewing the pattern listing on the yahoo site, please link below to formally sign up for a square. If you have any questions about they yahoo groups please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
Payton was born on August 17th, 1999. She was born a few weeks early but without complications. She is the youngest of four. She has three older brothers to watch over her. At six months old she started crying more then normal. We didn't think much of it at the time. By nine months she was crying ALL the time, she stopped eating and stopped walking. We would take her to the pediatrician and the answer was always the same, babies cry... don't
compare her to her siblings...some babies are more fussy then others.
At the same time this was happening we moved. Due to the move we switched pediatricians. What a blessing. We switched to Dr. K., what a wonderful physician. The first time he saw her he knew something was wrong. Finally someone was listening. He ordered lab work and x-rays. Before we even got the results her knee swelled up. The doctor sent her to Phoenix Children's Hospital. At the hospital we were told our daughter has Juvenile Rheumatoid Arthritis. With those three words our journey began. Little did we know the havoc JRA could have on her whole body. Jra can cause secondary conditions, she has a few of them. She started having GI bleeding which required a blood transfusion and many tests and stomach problems. She also has Uveitis. Uveitis is inflammation of the eye. It can cause blindness.
Payton still suffers with all of these conditions. I will not get into the many years of pain, medication side effects, the countless hours on the phone with insurance companies. The disappointment and heartache is just too much to share, ten tears is a long time. I will leave that in the past where it belongs, the past.
This year her dad's company switched insurance companies. A nightmare I hope no one ever has to go through. When you have a chronically ill child it really makes things difficult. Her infusion treatment was stopped due to a denial from the insurance company. While we were fighting for the treatment Payton started to have new symptoms. A different type of pain, major headaches, confusion, hair loss, skin changes and nail changes. She had an MRI, CAT scan and lab work. We came to the conclusion it was JRA that was not being treated properly (no infusion). We went on with the fight for treatment.
On February 20th her left ankle swelled up and was very painful. We did what we always do ice and elevate. That Monday I called the Rheumatologist. He agreed it was arthritis he called in a prescription for a steroid. We thought it would get better. It didn't, it got worse. I took her to the office so the doctor could examine her. He told us it was not her JRA it was something else....and with those words the second part of our journey began.
He told us it was Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. He ordered lab tests, x-rays and gave us a prescription for pain. Foolishly I thought it would be okay, it's was just another of Payton's weird JRA problems. I couldn't of been more wrong. The next day the pain was so intense you couldn't touch her foot. She couldn't put on a sock and she could no longer walk. As the day went on it progressed up her left leg. Her toes could not move and she cried from the pain. The medication, Tramadol, didn't address the pain.
That night I called the on call doctor. He sent us to Phoenix Children's Hospital. They admitted her immediately. They gave her iv morphine, it didn't help. They switched to iv Fentanyl. The pain remained and the medication made her sleepy and loopy. To say the least she was out of it, but at least the crying stopped. We met with her team of doctors. An anesthesiologists, physical therapists, occupational therapist along with her regular pediatrician and rheumatologist. We will need them all. They explained the diagnosis and treatment. Only then did we realize the monster Payton will be facing. It went from a journey to a war. The doctors are still planning an attack. We know it involves many medications and hours of physical therapy a day. I call this a plan of attack because it is a war. Payton's body is at war with itself. The doctors might not be able to tell us what the future holds but I am sure of one
thing...She WILL win and she will not go down without a fight! Her body will be healed and one day we will look back on this and say remember when this happened....
Thank you ALL for taking the time to make Payton such a beautiful quilt, it is gorgeous. What an amazing organization you are apart of.
I'm sure you have been told many times over how amazing Love Quilts is, but I feel it needs to be said again.... these quilts you make are so much more than fabric and thread. The quilts show the love with every stitch and the recipients can feel that love. These children often feel scared and alone. Your quilts reminds them with every snuggle that so many people love them and want to wrap them with that love.
Thank you from the bottom of my heart for making this precious quilt for our precious girl. She will use it and cherish it always. I pray that one day she can pass it down to her own child.
Thank you,
Tara Massahos
