Archive for September, 2011
More about the piano…
September 25th, 2011
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Posted by Karen
Last week I blogged about different things Miranda's been doing recently, and I mentioned that she started piano lessons. Since then a few people have been asking me about this.
I think a few folks have been wondering - how is Miranda going to play the piano with her arms as they are? It's true that Fibrodysplasia Ossificans Progressiva has messed up my gal's arms. Her first FOP flare-ups at age 2 fused her shoulders almost completely in place, and within a year of that, FOP bone locked her right arm in an "L" postion and she could no ...
School, activities and the continuing flare-up
September 18th, 2011
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Posted by Karen
As that TV commercial proclaims, "It's the most wonderful time of the year!" (ha ha ha) Yes, it's return to school time... Miranda has now been back in school for 2 weeks. It's been so far, so good in grade 1.
I think we worked out a lot of the kinks last year. The teachers know what to do with Miranda in gym class (a "no run zone" and activities on gym mats), and an educational assistant (EA) helps Miranda with reaching/bathroom/safety/ other things she can't do. We have had a bit of adjustment as Miranda tests the boundaries of the new EA... For ...
What a flare-up is like
September 11th, 2011
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Posted by Karen
About two weeks ago, we discovered that Miranda was at the beginning of a Fibrodysplasia Ossificans Progressiva flare-up. We were sad to find this out. She had gone a year and 2 months with no new swellings; why couldn't the lull just continue? (may as well ask why the sky is blue...)
This wasn't the shoulder flare-up we had feared a few weeks ago. The abrasion on Miranda's right shoulder just healed the way small scuffs should, with no further trouble. Rather, this was a swelling on Miranda's abdomen.
It all began two Mondays ago when I was working in my home office ...
Hearing Loss, Wheelchairs, and KOMO
September 9th, 2011
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posted by Suzanne
I have been overly anxious for a while now. In August Erin started a string of appointments at Seattle Children's Hospital. I'll break it down by clinics.
Rehabilitation Medicine
The occupation therapist and physical therapist measured and recorded Erin's range of motion. The numbers don't mean much to me however they pointed out that she is walking with a slight limp. Her left leg is longer than her right. Initially there was talk about wheelchairs but we weren't convinced at that time she needed anything more than the pediatric push wheelchair we have in the garage. We agreed to a ...
Forest Grove Childare – amazing friends
September 4th, 2011
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Posted by Karen
On Friday of this past week, we got a very pleasant surprise.
As you may know, we recently did a major fundraising drive for the Canadian FOP Network's "Ride to Cure FOP". Back in May when we decided to do the event, I sent an e-mail far and wide, asking everyone I could think of if they would donate to our cause. One person I e-mailed was the director of Miranda's old daycare, the Forest Grove Childcare Centre. I thought maybe someone at the centre might consider making a modest donation. Miranda had gone to their centre for about 2 years, ...
