posted by Suzanne
I am officially STOKED over our upcoming trip. In my mind we have jumped over all the hurdles that we had to deal with. First were all the August birthdays. Second, get the kids ready for the new school year. Third, pay the mortgage. Fourth, wait for the mortgage payment to clear. Finally, [...]
We did it! We made it through the first day of school and kindergarten for Erin. Erin is fortunate to have a great group of teachers and specialists that put together a safety plan in order for her to participate in all-day kindergarten. Alan and I had two meetings with the school to make preparations [...]
Posted by Karen
We’re coming into the home stretch… One more week, and then school begins! Since Miranda will be starting kindergarten, it’s an especially exciting time at our house.
It’s funny; Miranda herself is pretty low key about the whole thing. She’s been in daycare/preschool, she knows lots of the kids she’ll be at school with, [...]
Posted by Karen
Yesterday we returned home after a really terrific summer vacation. We had been away for just over 2 weeks, spending the first week in Calgary with my family, and spending the second week at a condo we booked at the Panorama Mountain Resort.
As I commented in my last blog entry, I think my [...]
Posted by Karen
In recent times, Miranda’s had to have a bunch of appointments and assessments related to her Fibrodysplasia Ossificans Progressiva. This is all in connection with starting school in the fall. I know it’s all necessary, but I can see she’s getting really tired of it. Miranda’s just not cooperating as well with these [...]
posted by Suzanne
The IFOPA sent out the following text in an email regarding the newly-established “Rare and Neglected Disease Caucus.”
“As part of our ongoing effort to reach our elected officials with the important message to increase attention to rare and neglected diseases, we wish to share this notice with you and encourage you to take [...]
posted by Suzanne
We use Starlight Foundation’s Great Escape program all the time. Once Erin was accepted with Starlight, we were added to an email distribution list that notifies parents of upcoming events. So far this summer we have attended pre-screenings to movies, went to the University of Washington planetarium (which isn’t open to the public), [...]
Posted by Karen
I learned something interesting and useful this week. I’ll tell you what I learned, but first, will back up a few steps and set the stage for explaining it.Â
If you read my blog last week, you’ll know that Miranda took a nasty fall several days ago. She had been outside with her daycare [...]
I really need to get back into this blogging thing. When Erin was diagnosed with Fibrodysplasia Ossificans Progressiva in June 2008, Alan and I felt like our child was the lone victim of this crippling disorder. We were quickly proven wrong when we became members of IFOPA (International Fibrodyslpasia Ossificans Progressiva Association). Still we felt [...]
Posted by Karen
Early this week, I got a phone call from the daycare - “Come pick Miranda up, she’s had a fall and is crying!” This is the first time this has happened in 2 years of daycare attendance, so I figured it must be serious. When I arrived, I found a sobbing Miranda with [...]
