Now that the “shock and awe” aspect of Erin’s diagnosis is starting to fade I have had more time to get some of the administrative things done. I registered Erin with MedicAlert yesterday. Thank goodness another FOP mother gave MedicAlert permission to use her son’s information b/c I would not have thought of all the 
details like she did. Now that if Erin has a medical emergency and Alan and I are not available, MedicAlert will have her information to pass on. We put Dr. Kaplan and her pediatrician down as her physicians to contact. I highly recommend MedicAlert (www.medicalert.org). They were so easy to work with. They are a non-profit org so the annual fees are actually a donation of sorts. If you need a medical bracelet…use MedicAlert!
Brennan and Larkin spent yesterday and today with their Uncle Mike. I am excited to hear about their “downtown adventure.” Mike took the boys to different fun places in downtown Seattle. They even got to ride public transportation for the first time. I am sure that was a blast for them.
So the three of us went for Thai food last night and we noticed that Erin hasn’t “sat” at a table in a really long time (maybe since May). If she’s not sitting in Daddy’s lap, she’s kneeing on chairs. I have suspected that this last flare-up led to some bone formation along her lower spine. I am wondering if that has anything to do with her not sitting in a chair. Erin’s OT, Kate, will be here on Friday. I am going to have Kate look into the issue. The one place she loves to sit is on the couch where she can nestle into the large sofa cushions.
I also noticed that I have been picking up things for her off the floor. If I make her do it, she has to get down on one knee. Her back isn’t as flexible as it has been in the past. I am so nervous what FOP can do to her spine. I read last night that if one side of the spine develops more bone than the other, scoliosis can be a big problem. Ugh….
I called Dr. Kaplan’s office on Monday to set up an appointment for September. I am waiting for a call back to see what his availability is. Apparently he’s on vacation the last part of September. I am hoping his thorough examination will shed some more light on how her FOP has progressed. Is it aggressive or is it right on track? We know she’s in an “active” phase of FOP. These phases come and go. Some people don’t experience an active phase for a long while. This must be Erin’s first “active” phase b/c of all the changes to her body. I am praying for it to slow down and to give her little body a break.
We sent Erin’s x-rays, CT scans, MRI images, and photos to Discovery Health Channel’s Mystery Diagnosis. Hopefully they will find some use in what we sent them.
