Hayden's Hope

Saturday, April 23, 2011

20th Annual Research Report from the Collaborative for FOP Research

John and I are very excited to share with you the 20th Annual Report for FOP Research.  We have made such strides and a potentail therapy is already being studied.  This is all because of your support for Hayden's Hope and our fundraisers over the last 8 years. Becuase of you we have raised almost $1million in research funds for FOP. So exciting! Below is the link to click on which will redirect you to the IFOPA website where you can down load the report.

Friday, April 15, 2011

Top Ten Reasons You Know You've Been in the Hospital Too Long

Top Ten Reasons You Know You've Been in the Hospital Too Long:

10.) you are on a first name basis with all doctors and nurses in your unit....as well as the janitors and admin staff
9.) you feel totally comfortable silencing alarms on the various machines your child is hooked up too....he looks fine and is sleeping.
8.) you no longer hear the alarms on the machines your child is hooked up too because you've finally gotten 10 minutes of peace and are fully engrossed in a book that you haven't had a chance to read in a week.
7.) you feel completely comfortable barking at the resident during rounds (i.e. in front of 15 other doctors) because he does not communicate well.
6.) you feel completely comfortable complaining to the cheif of the department of said resident about his horrible communication skills
5.) you recieve apology from said resident and preach to him like his is a kindergartener about how good communication is the key to success in any profession. (Julie Althoff - Hayden's kindergarten teacher- would not approve of his commmunication skills either.)
4.) you start telling the nurses and doctors what to do and feel completely comfortable and commanding in your medical knowledge even though your degree is in Political Economies of Industrial Societies (but your sell textiles to the healthcare industry! )
3.) you forget what you say to who and when you said it
2.) you forget what day it is
and the top reason your know you've been in the hospital for too long is....

1.) you have run out of space on the walls to decorate and start decorating the ceiling!!! Hayden's Room Remodel Complete!

Sunday, April 3, 2011

Potential Cure to FOP - Article in Nature Medicine

I am so excited to announce an article of great significance to the FOP community to be published today in the online addition of Nature Medicine. Below is a press release describing this exciting news. Look forward to more information regarding this release in the April 7th release of the 20th Annual Report of the FOP Collaborative Research Project, and also an editorial in Nature Medicine by Drs. Kaplan and Shore, which will be available on the IFOPA website.
Click here to read the press release

Exciting News!!!!!!!!!!!!!!!! Congratulations to our collaborative research team on this amazing work.a
As a supporter of Hayden's Hope, know that you are responsible for helping to make this happen!! 
Thank you!

Friday, April 1, 2011

Lots Of Helping Hands

The wonderful crew at Old Mill School (thanks Andrea, Nicole, Tracey & Danielle) has set up a website for Hayden on LotsaHelpingHands.com. If you are interested in joining the "Pheif Family Support" community. Click on the below link. If it asks you for a password, just click that you dont have one yet and a site administrator will approve you as a member. http://www.lotsahelpinghands.com/c/639072

Field trip to the hospital courtyard

Our plan today is to get Hayden out into this fabulous sunshine. The respiratory therapist is going to get a portable ventilator and Hayden will go in a wheelchair as he is too weak to walk. There is a courtyard that is about 50 yards away that gets great sun. I can't think of better medicine to get Hayden feeling better.