Friends With FOP

We have a number of beautiful things left from Erin's fundraising garage sale, and we're selling them to raise funds to help pay for Erin's continuing expenses. They are listed on craigslist as well -- on this site, we're able to post a lot more photos so that you can find just the right things for your children and yourself. If you’d like to see some of the other items we are selling to benefit Erin, just type in “cure erin kate” in the craigslist search for items for sale. We have many great things for ...

Today I had a meeting with Erin's preschool teacher, the OT/PT specialist, and the para in the class.  It has taken Erin much longer than I expected to warm up to the class and her teachers.  For a long time she wouldn't talk at all.  They could tell she wanted something but she refused to "use her words."  By Halloween she had started to come around.  In time she began doing morning exercises with the class,  singing along, asks for snack/juice, and she stopped using the special chair the teachers had picked out for her (because of her back limitation).  ...

I had a question asked yesterday about why we chose to put Erin in a helmet.  When I read the email I had to do a double-take because it was then did I realize that we had to make several decisions within the first few weeks of her diagnosis.   In my mind I was barely functioning at that time and Alan and I had to make decisions fairly quickly.  The person who emailed me provided a different perspective on the helmet issue.  Ever since reading and responding to the email, I haven't been able to get the conversation out of my ...

Saturday was a beautiful day.  Not only was the weather perfect but we had a great visit with the Friz family from Burnaby B.C.  We are only a three hour drive from each other but we have to cross the border to see each other.  The Friz have their paperwork in place to cross the border so they came down this weekend. It was just awesome to see Miranda and Erin get together.  There was a little awkwardness at first but they warmed up to each other fairly quickly.  What broke the ice was Erin invited Miranda up to her room ...

Our beloved Aunt Fran did some research and found out another way you can help donate money towards FOP research through the Combined Federal Campaign (CFC).  If you work for the federal government, you can make a contribution to the National Organization of Rare Disorders code #11992.  Here is a part of the email that Aunt Fran sent to me.... "I checked out the website for the National Organization for Rare Disorders.  They have published information booklets for the medical community for nine of the disorders they deal with, but not for FOP. (http://www.rarediseases.org/programs/freebooklets) Here is a quote regarding the publication of such a ...

I mentioned earlier that Erin's preschool class is participating in a fundraising event for their school.  Each student made a snowman picture and Artwork For Education turned them into greeting cards.  They are available to order online.  Go to www.artworkforeducation.com, choose "Washington" for the state, then CLC AM/PM Preschool, and finally click on Killen.  Erin's snowman is the bottom right image.    Last night I saw Erin's back is becoming more bumpy.  She came home yesterday from school and was very upset.  There was nothing I could do to console her.  I had to put her down for an early nap.  She did much ...

Okay, so many urban legends surrounds the whole soda tab myth.  However, I can attest that charities do collect the soda can tabs for donations.  When we were at Philadelphia's Ronald McDonald's House, they had so many soda tabs, it was crazy!  So here we are, complete Diet Pepsi soda junkies (Fitness Together would not be happy with my admission to that)...and I started pulling our soda tabs.  Originally my plan was to donate them to the Seattle's Ronald McDonald's House.  Now I am researching how the IFOPA can benefit from them.  The downfall is the Ronald McDonald's Houses have ...

Are you on Facebook?  If so, please become a fan of "International FOP Association *IFOPA*."  Ashley Kurpiel has started the fan page.  You do NOT need to be a member of the IFOPA to join the fan page.  Several pictures have been added and the FOP community has joined in.  Ashley is the woman whose story will be shared on Discovery Health Channel's Mystery Diagnosis this winter.  Yep, she's the one who turned me on to Facebook.  We got in contact with each other after the producers of Mystery Diagnosis introduced us.  During my first conversation with Ashley, she had ...

I, for one, have truly enjoyed a "normal" week again.  We all went through our own "re-entry" phase when we got back from our trip.  With all the illness gone, Alan returning to work, the kids back to school, and I have the daycare up and running again....we all feel renewed.  Larkin has had a little trouble reacclimating to school but that's because he was gone for two weeks.  He's feeling the pressure of missing so much school work.  Erin's preschool is doing a fundraiser where we can purchase greeting cards with the student's artwork.  Erin made a snowman for ...