Help Alivia

When Alivia was around 3 years old I began to notice that her hands were always cold. They would turn a horrible blue gray color, and she complained they hurt. Sometimes she would get so cold her fingers would turn from blue to white on the tips. She would cry when this happened. So, of course, I mentioned it to her pediatrician. We watched it, and finally, having no idea what it was except maybe poor circulation he sent her to a cardiologist. That dr. knew enough to suspect she needed to see a rheumatologist. So when Alivia was 4 we met Dr. Graham at Cincinnati Children's Hospital. He immediately diagnosed her with Raynauds. He noticed other things too. Her fingers had "ulcers" at the tips. Her cuticles were thick. Her skin was shiny, and she had blotchy spots. He told me that Raynaud's may be secondary to something bigger, such as Scleroderma, that may be laying beneath the surface.

To be honest, I really didn't take him completely seriously. Alivia looked, and felt fine. But, he wanted to do tests. Turned out she was ANA positive, and other things. ANA positive means you may be more likely to have an auto immune disease, which is what scleroderma is. So, for 3 years we watched and waited. We had quarterly tests, and bloodwork.

Then on February 10, 2005 Dr. Graham called my husband and I to his office. He told us Alivia's latest bloodwork showed a protein called SCL-70. Basically, in simple terms, he explained that this was the last thing in line to finally make a diagnosis.....Alivia had systemic sclerosis. Everything was a blur. We listened as much as we could, but when a dr. says "I will do everything in my power to give your daughter as long a life as possible" your mind kind of shuts off. Everything changed immediately. We began a routine of nightly medicine, weekly injections, and monthly infusions of IVIG requiring an overnight hospital stay. Our family and friends rallyed around us as we tried to grasp this new path for our family. They told us to live on day at a time. But even one day was too much to think of getting through. So I adopted the motto- Moment by moment. That is how we lived.

For 2 1/2 years we lived this schedule. It was our routine. Our normal life. Then Alivia looked good. Dr. Graham was pleased. Then one day he said she looked so good, and was doing so well he wanted a second opinion on her current course of treatment. What was this? A ray of hope? So we went to see a world reknowned authority on SS, named Dr. Medsger, in Pittsburg, PA. Alivia's first plane ride. On July 26, 2007 Dr. Medsger examined her, and asked lots of questions. In the end it was determined that Alivia's SS is in the limited category. She could stop almost all meds, and infusions.

Once again, our lives changed. Only this time it was a good change. Previously, Alivia had her infusions on Fridays, which meant me and Liv at the hospital, Scott and the boys at home. Today, Fridays are family nights. Regardless of what we do, we spend the time together as a family. Scott and I feel the dark cloud we walked under is gone. We're not afraid to look into the future. Alivia has changed too. It is not a change you can put your finger on, but it's there. Her smile is bigger, her eyes brighter, and her laughter louder than ever!

We still know all our dr.s very well, and we can direct you just about anywhere you need to go inside Cincinnati Children's Hospital, but we are thankful for everyday. For every moment. God holds Alivia in His hand, and whatever each day brings we know He is in control. He loves us, and will keep us through anything, and everything. Moment by moment.

(For definitions of some of the medical terms used above, please visit the medical terms/ info tab)

www.rheumatology.org/directory/geo.asp

www.srfcure.org

www.mamashealth.com/skin/sclero.asp