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 [...]

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 [...]

We’re still dealing with swelling on Erin’s right side of her back. She usually has a hard time getting comfortable when going to sleep and last night was a little more difficult than usual. The swelling has become worse and it has some black and blue markings. She has taken two doses [...]

Melissa is one of our daycare parents and she has offered to look into possible fundraising options…even maybe organizing a non-profit in Erin’s name.  A couple of ideas have been floating around about different fundraising events.  Melissa said she would love to hear from anyone who would be interested in helping out.  If we actually get a non-profit [...]

We received a wonderful inspirational card in the mail today from TVA.  Erin and the family has been placed on their prayer list.  Thank you Memaw (Grandma Retha) for the request! 

I talked to Dawn (genetic counselor) today. She said Dr. Kaplan sent her an email yesterday and that she would try to call him first thing tomorrow morning. Dr. Kaplan did mention that he wanted her genetic test results. Dawn called the lab in PA and they said the results will be ready on June [...]

We had a very busy weekend with the boys’ baseball end of season Jamboree on Saturday and then Father’s Day today. Normally I would have left Erin at home for the Jamboree but it’s hard to get out of the house with two kids in their baseball uniform. Erin loves baseball. So [...]

Erin has been taking large doses of Naproxen (Aleve) for several days now.  The new swelling had not subsided so the genetic counselor called in a prescription for Presnidone (steroid).  We have learned through Erin that neither medication tastes very good.  With the Naproxen, I am able to squirt a little at a time into [...]

Sue noticed last night that most of Erin’s right side is swollen.Â
Erin’s right shoulder is swollen the most… so much so that you can’t see her actual shoulder-blade.  The swelling in her shoulder feels very firm, but is not red at all.  She has swelling on the right side of her tummy and also on the [...]

We’ve added a new photo gallery that’s all about Erin!  Click on the “Photo Album” link on the site or visit this link:
Erin’s Photo Album
Oh, and I’ve scoured the Interwebs for FOP information, and found other FOP patients with websites, news coverage, and general info about the disease.  There’s lots of great information, and I [...]