Friends With FOP

Here's a link that someone within the FOP community found.  It's an article about people in Australia who are diagnosed with rare diseases have a tough time getting the right medical care.  The link has sparked a great online conversation about "orphan diseases" and "orphan drugs."  Apparently there is a big difference on how rare diseases are handled within different countries. http://www.smh.com.au/news/health/sick-and-ignored-our-medical-shame/2008/09/06/1220121593204.html

I ended up going to the preschool meeting this morning instead of Alan.  I was very impressed, once again, with how the school district handles special education.  Since we were receiving Erin's diagnosis at the end of last school year, we had to put off any recommendations until this year.  Basically the school psychologist agreed that Erin qualified for the school district's services under "orthopedic restrictions" or something to that affect.  We went over what is needed to be done between now and Monday.  Friday Alan will be going to the IEP meeting with the teacher.  I briefly went over the ...

Things are good right now with Erin.  I don't see any new flare-ups and she's not complaining of any pain.  My friend Tina has been busy selling the big items that were left over from the charity sale.  She's had great success with Craigslist.  She's been instrumental with Erin's cause.  Not only has seen taken on selling the extra items we saved from the sale but now she's working with her father to come up with a custom helmet for Erin.  Initially I was hoping Tina's awesome sewing skills could help us sew a few layers of neoprene together to make ...

Karen posted a comment below and said she hoped that nothing would develop from Erin's fall.  The bandage came off last night and she has a goose-egg under the wound.  She developed a permanent goose-egg on the front of her forehead for all the falls she had taken since she started walking.  As her head grew, the lump on the forehead changed shapes and is now pretty much unnoticeable.  It's still there though.  Alan and I can see it and feel it but her bangs cover it up mostly. Erin's last hair cut was at the beginning of August.  I am going to ...

The Spencer Man Foundation is hosting their annual Spencer Man Memorial Benefit Drawing on November 7, 2008.  The proceeds will go to benefit FOP research.  The Spencer man Foundation will match every dollar to the IFOPA from the drawing (up to $4,000).  A $25 contribution will become a donation of $50. Tickets for the drawing will be available through October 27, 2008.  Here is a list of the prizes that will be given away: 1. Toshiba 32" 720P LCD HDTV - $680 value 2. Visa Gift Card - $400 value 3. Nintendo Wii + Wii Sports + 1 Controller + 1 Nunchuk - $350 value 4. ...

The school district called.  We have a meeting with them on Tuesday, Sept 9th and she starts school on Sept 15th.  I got so excited to hear that she qualified but now I am on the verge of a panic attack.  Alan says that Erin is ready for school but the bus may be scary.  I am tearing up just thinking about the anxiety she may have during her first week.  It's kind of funny that yesterday I was just at the bus stop with all the moms in the neighborhood.  A few of the kids started kindergarten this year.  ...

I waited as long as I could to purchase our plane tickets.  The airfare started going up so I jumped on while I could and purchased our tickets over the weekend.  The boys will be missing a little over two weeks of school.  I'll just need to make sure they do some school work every day.  We'll be flying into Nashville on October 2nd.  Our appoinment with Dr. Kaplan is October 10th in Philadelphia.  We're taking this opportunity to see family we haven't seen in years.  There is quite a bit of driving involved but it will be worth seeing ...

Alan left for a conference in downtown Seattle on Friday.  Since he was staying away from home for the night, I had Erin sleep in our bed with me.  I figured I would try to minimize the chance that she would wake up in the middle of the night.  I had a 6AM workout scheduled so I wanted to make sure I got enough sleep the night before.  Erin fell asleep fairly quickly.  An hour later, she started to roll.  Usually she rolls around and kicks us for leverage.  This time she kept rolling.  By the time I realized she ...