One year ago today Alan and I received the call from the genetic counselor. Erin’s DNA test has come back positive for FOP (Fibrodysplasia Ossificans Progressiva). I know I had convinced myself that the swelling could be some type of a lymphoma issue. I still remember the day when Alan said, “I hope this isn’t that disease that turns muscle into bone.” I thought that would be much worse than a cancer diagnosis. By this time last year, as we waited for the test results, we were trying to come to grips with the potential FOP diagnosis. Approximately 5:30 on June 24th, 2008 as my last daycare child was walking out the door, the phone rang. That evening I spiraled downward into a depression unlike I had ever experienced. Even though Alan and I had about three weeks to sort out our emotions I had to have the test results to finally allow myself to feel the sadness.
A year later the family has come to grips with what kind of life Erin will lead. We have a much more positive outlook for Erin. We met Sarah Steele and Sharon Kantanie. Of course we met Miranda and the Friz family. We hooked up with FOPonline and linked up with other FOP families on Facebook. Fairly quickly we created our own support system. As parents we still have our sad days but the bright, sunny days out number the dark, cloudy ones.
A year later Erin has completed her first year of preschool. She is determined to do things herself. Recently she discovered her confidence on the playground. Her preschool teacher coached her how to go up and down the slide on her own. Erin is quite the social bunny once she warms up to people. She wants to run around and play with all the other kids in the neighborhood. Erin is definitely a well rounded three year old who struggles more with being three than living with FOP.
A year later we are without medical coverage. We are waiting for the state of Washington’s Division of Social and Health Service (DSHS) to approve medical coverage for the kids. Until then I have been utilizing Wal-Mart’s $4 prescription plan and Rite Aid’s discounted prescription service. Unfortunately Erin’s pain medication is not covered on either plan. However I can purchase the medication for $40. No it’s not $4 or $8.99 but at least it’s not over $100 like the boys’ medications are.
Yes she has had her flare-ups but the restrictions that developed from last summer were the only ones all year. The FOP bone in her back has grown, shaped, and has protruded out. Her forehead took several hits and new bone developed. As of today Erin has not had her pain medication in over a month. Most importantly Erin is happy. Alan and the boys’ worked hard in renovating our backyard. In the end, they created a space not only for kids to enjoy but also a safe place for Erin to run around without her helmet.
FOP is so unpredictable but my wishes for Erin this next year will be filled with more accomplishments and less restrictions. Of course, I’ll be blogging my way through it!
Hi its lovely to hear about erin. Your backyard looks ideal. We are also hoping for a year of more accomplishments and less restrictions for Jasmine.