Bandages, Smandages

If there was one thing I could say that has been the most frustrating in Nicky’s life with EB when he was younger was dealing with bandages. There was the issue of the cost, where to get them, insurance coverage, what to use, how to wrap, trial and error, the list goes on and on. There was not one place in particular I could go for answers either. Different forms of EB’s wounds react differently depending on what wound products one uses, so if the person suggesting something was dealing with a different form of EB, I learned the hard way (at Nicky’s expense nonetheless) that I had to take that information with a grain of salt. TheRead More

If I Knew Then What I Know Now…

I was changing Nicky’s gauze last night, once again being amazed of how much certain types of gauze helps or protects Nicky’s skin and I wished the myself of today could not only advise the me of 16 years ago, but actually hand over the supplies to do it. If I could, Nicky would for certain be better off today. No doubt about it. I can’t even begin to describe the horrible shape I was in when Nicky was born. I am writing about it in my book and I shake my head in disbelief. The various Insurance companies refused to cover bandages for over a decade. The bandages themselves were… sad. All we had to work withRead More