Archive for March, 2009
Those FOP toes
March 29th, 2009
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A couple of weeks ago I realized Miranda had outgrown her shoes. It was time for new ones! I set off to the mall to try and find her some...
Ever since Miranda was old enough to need shoes, I've had to buy her footwear with a wide toe case. When she was very young, of course, I didn't know why - I just figured she had an unusually broad foot with a bunion. OK, bunions are unusual on a baby, but whatever, our pediatrician wasn't alarmed by her feet, so why should I be? Before we ...
Siblings
March 21st, 2009
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"Miranda, I'll play stuffy toys with you if you play superheroes with me." 7 year old Owen bargains with Miranda, trying to come up with an angle that will interest his 4 year old sister. Depending on her mood, she either jumps up and shouts her agreement, or else tries to bargain for something else...
Owen and Miranda play beautifully together. And, the older Miranda grows, the more things she can do that Owen likes. Our two kids enjoying each other's company is something I'm incredibly grateful for. As for any parent of ...
Injury
March 20th, 2009
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This week has been a long week. The daycare has been hopping all week. In addition to, Erin's preschool didn't have school on Wednesday and Thursday for parent conferences. She loves going to school but she also loves to play with the daycare kids. She has enjoyed her short school week. Today is a teacher workday for the rest of the school kids so there is much more activity in the playroom.
I was standing at the changing table tending to a child and Erin, being my shadow, was standing next to me. Before I knew it, a rocking chair came ...
FOP all day…
March 13th, 2009
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Many days, Miranda's FOP fades into the background. Yes, we have to be careful, and do a few things differently, but most of the time we just think about Miranda and don't focus on FOP. Today, however, was not one of those days...
Today was a day for dealing with things related to Fibrodysplasia Ossificans Progressiva. First, it was time for Miranda's monthly visit with her physiotherapist/swimming teacher. Last week we just went swimming on our own, but this week Miranda and I met her therapist, Andrea, at the pool. We went to CG Brown Pool here in Burnaby, which is an older ...
President Obama Reverses Bush Policy on Stem Cell Research
March 9th, 2009
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Many FOP patients and families were overjoyed to hear the official announcement that President Obama reversed the federal government's stance regarding funding embryonic stem cell research. Although the amount of money that the government could provide for research is unknown at this time, at least the door has reopened. This certainly does not mean we'll be any closer to a cure anytime soon. The FOP research team has been able to identify stem cells in baby teeth that may prove to be useful. The toothfairy will understand why Erin won't be putting her teeth under her pillow. I'm sure she'll ...
“Swimming lessons!”
March 6th, 2009
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Today I took Miranda to our local pool, which she calls going for "swimming lessons". She sees her brother Owen go there for lessons, so I think that's why she refers to the pool as swimming lessons. Miranda LOVES the pool, and I want to encourage her in the water, because swimming is said to be good recreation for people with Fibrodysplasia Ossificans Progressiva. Low impact exercise, no pressure on the joints, all that sort of good stuff. I have Fridays off work, so I like to take her to the pool sometimes on Fridays.
I always ...
IFOPA: Facts & Insights Series
March 5th, 2009
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The IFOPA has published a series of videos with Dr. Frederick Kaplan and Dr. Eileen Shore. Each segment ranges from little over a minute long up to eight minutes. They are an excellent source of information for FOP patients, families, and caregivers. We have them here on the website. They are in the tab to the right called "IFOPA Videos: Facts & Insights Series. Thank you to the IFOPA for producing these videos!!!
IFOPA Merchandise
March 3rd, 2009
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I have a surplus of IFOPA merchandise that I need to send back to the IFOPA office in Orlando, FL. Instead of mailing it back I thought I would sell the merchandise here. Here is what I have available:
Adult size IFOPA t-shirts - Small (34 - 36), Medium (38 - 40), Large (42-44) for $10 each; XXL (50 - 52) for $12
Youth size IFOPA t-shirts - Medium (10 - 12) and Large (14-16) for $8 each
Tote Bags: $10 each
Sports Bottle: $3 each
License Plate Frame: $3 each
IFOPA Awareness Bracelet: $2 each (adult and youth sizes)
Shipping will be through the USPS Priority ...
The Girl Who Couldn’t Move
March 2nd, 2009
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As promised, here's the video of Mystery Diagnosis: The Girl Who Couldn't Move that aired on Discovery Health Channel on March 2, 2009 at 10:00 pm EST.
Erin in Mystery Diagnosis Commercial
March 2nd, 2009
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Here is the commercial on Discovery Health Channel about the Mystery Diagnosis episode "The Girl Who Couldn't Move". The episode airs Monday at 10pm Eastern.
It's quick, but you can see the pictures of Erin's toes and her back in the commercial. Her toes appear at the 0:04 second mark, and her back is at the 0:06 second mark.
