Sews2Reap

Here is the history -  (if you want to skip this scroll down to the next bolded section) I don't post a lot about my son's medical condition. He was diagnosed with Parry Romberg Syndrome at 5 years old. I knew something was wrong starting at 2 1/2. It took over two years and lots of doctors to get a diagnosis and start treatment.  Because PRS is a rare disease, ( Click the link to learn more about  Parry Romberg Syndrome .) there hasn't been much research or treatment history for this condition. We were so fortunate to find a doctor who happened to read an article about it, start some research and figure it out.  Beginning treatment at age 5 slowed the atrophy and scarring that characterizes most PRS patients. His symptoms and pain went into remission at age 5 with the treatment of steroids and low dose chemo. He went for nearly 4 years with check-ups and no medication. We were so thankful! The remission ended at when he was 9 with a stroke-like episode out of nowh

Where to begin? So much has changed in less than a year. Here is what has happened since moving to Kansas in September of 2018. 1. I am no longer teaching sewing in the classroom. (insert tears here) I still hope to teach again. I love it and miss it. A few attempts at video tutorials have been made. I am still figuring it all out. The editing software has made it very frustrating and I need to get the videos more polished. You can see what I have been working on here:  Sewing and Such 2. Some of my time has been spent staying with my parents and helping my sister out in the country. I have always done this, but there have been some surgeries, etc in the last few months.  I can't explain how being in this particular place with my family recharges me.  Stunning sunset at the ranch. 3. As always with moving we had to set up new doctors and dentists. But having a child with a rare disease makes changing doctors an event. We have been traveling from Oklahoma to Texa