Friends With FOP

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 her a "heads up" that Erin may be grumpy.  To my surprise, the teacher responded after preschool was over to tell me it was Erin's best day at school yet!  She participated, talked, and sang way more than she has so far this school year.  ...

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 excited about the plane trip and seeing family.  I made the mistake and mentioned in front of them that we were all to have blood drawn when we see Dr. Kaplan.  Every day I am asked when they get their "blood shots." Erin has been just ...

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 the bad luck.  Fair warning...I have lost any tactfulness I may have had earlier today. Dr. Kaplan's office called today to remind me to register the family for Erin's appointment.  Ugh...I had to call twice b/c someone hung up the phone when I finally got connected.  ...

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 week, these annoying commercials of Barbie's new DVD Barbie's Diamond Castlecaught her eye.  She calls it "the princess castle."  I just happened to walk by the rental stand at the local grocery store and the DVD was staring at me.  Yes, I rented it.  Alan ...

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 black and blue (and today is school pictures).  Oh well...she's still a cutie.  If Larkin has taught me anything, it's get the pictures taken regardless.  Larkin would just scream when we walked into a studio.  I have plenty of professional pictures of him screaming and crying.  ...

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 her harness before the bus arrived but her morning bus isn't adapted to use them.  We then tried the built-in car seat.  That was a no-go.  She couldn't scoot her tush back enough to allow the seat belts to go around her.  Finally we had ...

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 any of it.  She planted herself in Alan's lap and wasn't getting up for nothing.  Well, at least until one of the teachers announced it was time to make play dough.  Alan said she perked up and was ready to play.  The kids helped make ...

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 year olds do?).  Yesterday she was simply walking and tripped over her own feet.  Then today she tripped over a cord.  On my Facebook page I posted about Erin's new swellings and another FOP mom commented.  Marie, from Sweden and mom to Hugo, said that she ...