So I am coming to the conclusion that Erin is just a “Mommy’s girl.”  She did so well a few weekends ago when her Uncle Sean watched the kids while Alan and I went to Lake Chelan for our anniversary.  I ended up driving a good part of the way which included driving over Steven’s Pass in a snow storm.  As I was concentrating on trying not veer off the road, my thoughts drifted to Erin on how she was handling Alan and I being gone.  In the end, she handled our separation much better than I did.  When Alan and I arrived home on that Sunday, Erin was asleep on her couch in a deep sleep.  I had to wake her up.  I thought she would be so happy to see Mommy and Daddy home, but I was wrong…very wrong.  Instead she went into a whiny fit about how she hurts.  Sean swears she didn’t complain at all while he was with her (and I believe him).  She either handles the pain quite well while I am gone or she holds it in until she sees me (maybe a little of both).

I am happy to report that she may be in a slow phase of her active FOP.  Her back still morphs slightly but nothing too shocking for us.  I have not given her any Naproxen in over a week (wow…really?).  After my meeting with Mrs. Killen and the specialists, I was determined to find her a different jacket for school.  Sean and I went to the Disney store’s midnight after Thanksgiving sale.  I bought this cute winter poncho in which she doesn’t need to force her arms through sleeves.  I thought I hit the gold mine on the poncho…no sleeves and it keeps her warm.  That was until I put on her harness for the bus on Monday.  I put the harness on her and it totally defeats the purpose of the poncho.  Her arms and part of her trunk are exposed to the weather after the harness is zippered on.  UGH!  I can’t win.  However, she LOVES her new poncho and that works for me.  I absolutely loved the little green/pink coat I found at Osh Kosh’s outlet store.  I even thought of taking it to a tailor to have a zipper added to the back of the coat so we can put it on her easier.  She’s in love with her princess poncho and I am good with that.

Our friend Tina is still working hard on selling the remaining items from Erin’s charity garage sale.  That is why we have the Craigslist items uploaded here.  Thankfully our visits to Seattle’s Childrens Hospital has slowed down now that we have a diagnosis.  At least we have stopped running up doctor bills for now.  We still have medical bills accumulating; however I can see the light at the end of the tunnel when it comes to medical bills.  I am looking forward to raising awareness of FOP instead of worring about how to pay the bills that keep coming in.  The bills will always be there.  I look forward to the time when I can do more for the IFOPA.