Friends With FOP

Yesterday was a beautiful sunny day, and we had met some friends at a local park.  "Mom," said Miranda, glancing at 4 year old Hannah, "How come Hannah doesn't wear a headband?"  My heart gave a little twist.  It wasn't the first time Miranda's asked this question (in respect of any of her friends), but she's only asked it maybe 2 or 3 times now.  By "headband", she was referring to the protective neoprene headgear we have Miranda wear outside our house.  I answered her question the same way I did the other times: "Well, Hannah doesn't have FOP.  You ...

Thirteen year old Seanie Nammock from London (UK) is a vibrant young lady living with Fibrodysplasia Ossificians Progressiva (FOP).  Here are a few articles about Seanie. Telegraph.co.uk - Teenager Suffering from Rare Disease Mail Online - Girl, 13, Battling Rare Disease Metro.co.uk - Teenager Turning into Human Statue

As I prepare to write my thoughts, I read Karen's blog from earlier and I see a reoccurring theme developing - falls.  The weather has now reached the 60 degree mark in the Pacific Northwest and the sun has actually broke through the Seattle clouds.  I welcome the warm weather because the boys need to run around and stretch their legs.  Still, Larkin prefers to sit in front of the Wii but mention a walk along the trail, he's racing to get his shoes on.  No surprise that Erin wants to run around outside too.  We did have another stumble ...

Last Monday was Easter Monday.  It was a beautiful sunny day, so I decided to take the kids to a local playground.  Pete had to go out of town on business, so it was jut me with the kids.  When we were there, I was reveling in Miranda's newfound physical confidence (which I've blogged about before).  She ran about, climbed up and went down the slide on her own, and generally had a fun time.  We even had a couple of races. So there I was, as I said, enjoying this taller, older Miranda, who didn't need QUITE as much eagle ...

"OWEN!!  LET'S GO FIND EASTER EGGS!!!" Those were Miranda's first (bellowed) words today, Easter Sunday, upon awakening...  She whipped downstairs as fast as she could go, found Owen waiting on pins and needles in the living room, and the two of them scoured every inch of the living room and dining room looking for eggs hidden by the Easter bunny.  It should be no big surprise that Owen found most of them, but Miranda held her own and located several.  They had an absolute blast! [caption id="attachment_503" align="alignnone" width="300" caption="Here's Miranda with one of the eggs she found."][/caption] Miranda has a particular way ...

Erin has had a fantastic week.  She has had so much fun with all the Easter activities with the daycare.  To top the week off, we went to see Grandma (my mother) in Bellingham today.  I took the kids to an Easter egg hunt which was just down the street from Grandma's apartment.  No worries...Erin did very well amongst all the kids.  She filled her plastic bucket full of candies in no time.  My heart broke when I noticed it took her longer to pick up the candies because she had to get on her knees to pick up the ...

Once again, I have fallen behind on my blogs about Erin.  Spring Break is here and the daycare is keeping me busy.  Since my last post Erin had a streak of bad luck. From my last post, Erin had started another round of Prednisone (steroid) because of an injury to her right shoulder (the one shoulder she still has partial mobility in).  Luckily no permanent restrictions developed from the injury.  I can't say whether the Prednisone helped or the injury wasn't as severe.  Either way, we are very thankful she fully recovered. Unfortunately last Thursday (April 2nd) she started another round of ...

Spring has finally arrived in Vancouver - hooray!  We've been really ready for it in our house, I can tell you that.  It's been a LOOOOONG winter.  Consequently, we enjoyed the beautiful weather and spent a big chunk of this weekend outdoors. On Friday, I took Miranda and Owen to a playground for a while.  Of course, Fibrodysplasia Ossificans Progressiva restricts what Miss M can do on playgrounds.  The monkey bars are out, heh heh...  However, as happens with any other child, Miranda's confidence with playgrounds has been increasing as she grows older.  On Friday, I noted she wanted to climb ...