Friends With FOP

Still doing more research.  Many people with FOP don't have extensive websites, but I found one that has EXTENSIVE information and tons of pictures of their son growing up. The site (FOP Sweden) is in Swedish, but you can read the English translation by clicking here. The absolutely amazing thing is that this child has the exact same protrusion at the back of the head as Erin did... you can see it in their photo gallery. They have documented through photos all of the unusual lumps and swellings, which is exactly what Erin is going through.  It is interesting to see what we're ...

While searching for more FOP information, I came across a book by Carol Zapata detailing her life with a FOP child. Fortunately, much of the book can be viewed online here: http://books.google.com/books?id=2fABz0oXllYC&dq=finding+magic+mountain+life+with+five+glorious+kids+and+a+rogue+gene+called+fop&pg=PP1&ots=6dRJPxXG3m&sig=Uc0Yz7HyH4m4VuUFQVqQJw2QJNw&hl=en&prev=http://www.google.com/search%3Fq%3DFinding%2BMagic%2BMountain:%2BLife%2Bwith%2BFive%2BGlorious%2BKids%2Band%2Ba%2BRogue%2BGene%2BCalled%2BFOP%26rls%3Dcom.microsoft:*%26ie%3DUTF-8%26oe%3DUTF-8&sa=X&oi=print&ct=title&cad=one-book-with-thumbnail#PPP1,M1 There's a link to purchase the book, too.  I'll be reading this so I can learn what to expect, and how to deal with the challenges we will probably face.

That picture in the previous post looks nasty, but it looks alot worse up close.  She's had that swelling for nearly a week, but now there's a lump on top of a lump.  The new lump looks more like the freaky FOP lumps you  see around the 'net. The swollen area feels warmer to the touch than the rest of her skin.  Erin really likes to be lightly tickled over the area... it's very soothing and calms her down when she's feeling uncomfortable. Erin fell asleep in my arms (while watching Oobi on the couch).  I took her up to her bed, ...