Archive for April, 2010
Baby teeth and FOP (or, the tooth fairy/ferry)
April 25th, 2010
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Posted by Karen
A couple of days ago I found out Miranda has her first loose tooth! I was a bit surprised, as she's only 5 years and 3 months old. That's at least a year younger than her brother was at the same stage. Anyway, having the first tooth fall out is a big deal... *Sniff * - where did my baby go?
[caption id="attachment_876" align="alignnone" width="300" caption="The loose one is one the bottom row, just to the right of the centre of her mouth."][/caption]
Miranda doesn't attach much significance to this event - she's just excited about an impending visit from the tooth ...
Our 3 years with FOP
April 18th, 2010
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Posted by Karen
April 19, 2010 will mark the third anniversary of my daughter Miranda's diagnosis with Fibrodysplasia Ossificans Progressiva.
[caption id="attachment_871" align="alignnone" width="300" caption="Here's Miranda just before the FOP bomb detonated."][/caption]
A lot of FOP has happened in those three years. When Miranda was first diagnosed, we learned that many kids with FOP don't have significant joint restrictions until their late teen years, or even twenties. I clung to that, telling myself it would surely be the case for Miranda, and she would have not much beyond flare-ups in her back and neck for several years.
Guess what? Nope, FOP had different plans ...
Erin’s New Angel
April 13th, 2010
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Posted by Suzanne
Once again life has a way of getting in the way of me staying on top of this blog. Our family has had a rough 2010 so far. Beginning on the morning of Christmas 2009, we received a phone call that my father had three heart attacks within an one hour time span. My father, Michael Ryan, had been battling heart disease since August 2000. We all knew his heart would never get better but we had hoped medical technology would intervene and extend his time on this earth. In a way it had...several pace makers, defibrillators, and ...
FOP on TV
April 11th, 2010
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Posted by Karen
Today I'm going to talk about Fibrodysplasia Ossificans Progressiva on television. People with FOP have been on TV a number of times over the past several years. Mostly it's been on news or educational-type shows, but there was an occasion when a made-up character had FOP.
The fictional character appeared on an episode of Grey's Anatomy. It was on TV in the early spring of 2007; I think March. I saw that episode, but get this - it was before my daughter Miranda's diagnosis with FOP. Just about a MONTH before... In the episode, a woman with FOP was brought to ...
More on FOP websites
April 11th, 2010
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Posted by Karen
After my blog on websites related to Fibrodysplasia Ossificans Progressiva a couple of weeks ago, I realized there were a few I left out.
I did mention one Dutch site, and there is a second one as well. The Dutch FOP group has a site at www.fopstichting.nl. Additionally, there's a German based European FOP group which has a site at www.fop-ev.de. The latter site has a section containing mini-bios of some of the members. I always enjoy reading those. I think the Brazilian FOP group also has a website, but I couldn't find it today.
...And no, I don't read ...
Gym, dancing, Easter and a bit of FOP
April 5th, 2010
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Posted by Karen
This was a really busy week for Miranda. It started out last Sunday with a birthday bash for a friend, who invited both Miranda and Owen to her party at a local gymnastics club. At first I thought this might not be such a good place for a 5 year old with Fibrodysplasia Ossificans Progressiva, but it worked out very well.
It turned out that the place we went to had wall-to-wall gym mats on the floor, and lots and lots of bigger cushions for throwing one's self upon after jumping, tumbling, cartwheeling, etc. This was, actually, a really good choice of ...
