Erin’s arm is slightly bigger than it was yesterday.  However it’s still not noticeable enough to show up in a photo.  As I said in yesterday’s post, I did start giving her Prednisone after she ate breakfast.  Then of course she got her daily Naproxen medication too.  I sent an email to the preschool teacher giving [...]

Anxiety is running pretty high here in the house.  I am trying to get laundry done and figure out what we can mail to Meemaw’s house and what clothes we need to bring.  Alan is busy trying meet deadlines at work but he’ll still need to remote into work while we’re gone.  The boys are [...]

This one is about Jasmine Floyd in Conneticut.
http://www.telegram.com/article/20080928/NEWS/809280389/1101

To be fair, I’ve been kind of on edge for a while now as I have begun to prepare for our upcoming trip.  My father used to say that if he didn’t have bad luck, he wouldn’t have any luck at all.  It must be a Ryan family thing b/c I think I have inherited [...]

This is about an eight year old girl in Canada with FOP… http://www.thelondoner.ca/ArticleDisplay.aspx?e=1213218

Erin is doing quite well now-a-days.  Her right eye is still a bit black-and-blue but it’s fading.  She actually told Alan yesterday, “Daddy, I got black on my eye!”  No new swellings and she’s in a great mood.  Oh, except for today.  She came home from school really grumpy so she went straight to bed.
Last [...]

I am now a believer in Naproxen.  Her facial swelling has subsided already.  The last facial swelling was over a year before Erin’s diagnosis and lasted well over a month.  Since the ER docs thought we were dealing with an allergic reaction, she was only taking Benedryl.  This time around has been so much easier.  The right eye is still [...]

Our little brave soldier boarded her bus this morning but not without tears.  As Erin and I approached the bus she was saying, “I sit in Mommy lap.”  “Come on Mommy.  We sit in bus.”  Immediately my heart began to ache just knowing that she wasn’t going to be a happy girl.  I put on [...]

She did it!  Erin had her first day of preschool.  Alan drove her this morning and ended up sitting with her for about an hour.  She was not too sure about her surroundings and was quite timid with the other kids.  The teachers led the class in morning exercises and story time.  However, Erin wasn’t having [...]

Just as I anticipated, her forehead and face has begun to swell.  She’s fallen three times this week!  Of course she wasn’t wearing her helmet.  Fortunately all the falls this week have been on the carpet in the living room.  One time she was running when she wasn’t supposed to (but isn’t that what three [...]