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DIS Dad#341
Savvy! I have yet to snag one of those recliner seats right in front of the big screen TV Join Date: Jul 2009
Location: Kentucky
Posts: 10,885
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DIS Dad #341
WDW Commando #187 Disneytopia LIVE! October 2012 Trip Report ![]() Randall found in my mailbox. ![]() |
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#437 |
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DIS Veteran
Join Date: Apr 2011
Location: WA
Posts: 541
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Thank you all for your prayers. My wife and I appreciate them. Will keep you all updated.
Kevin |
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#438 |
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Mouseketeer
Join Date: Sep 2011
Location: Cedar Falls, IA
Posts: 174
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We finally have a diagnosis
Gentlemen,
I don't post much here anymore, spending more time on the Facebook side of things, but I still follow this thread on a regular basis. I've offered up my prayers in support of you all, and now it's my turn to ask for the return of the favor. DD12 has been "sick" for almost a year now. It really got bad last year at Christmas (while we were at WDW no less) and we have had a dozen trips to the Children's Hospital at the University of Iowa over the last 10 months. It's been a long process of eliminating things and running tests, but they finally gave her a diagnosis yesterday. She has a fairly rare disorder known as Takayasu's Arteritis. (I have always said she is 1 in a million and now I have medical documentation to prove it). It isn't life threatening at this time, and shouldn't become so if they stay on top of the condition, but she is in for a lifetime of medical treatments and routine testing to make sure things are under control. On one hand I am glad to finally have a name to what has been going on, but on the other hand that name finally shows our fears - that this isn't something that is going to go away. Fortunately, we have good insurance that SHOULD pay for most of this (we have to fight an "unauthorized drug" battle since the FDA hasn't approved humira to treat this disease since it is so rare). Even MORE fortunately, we have good family and friends (you gentlemen included) to help us keep grounded. Please pray for energy to keep positive in this whole ordeal.
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Me - Ben (DISDad #662) , DW , DD12 , DD9 , and DS5 ![]() 12/1974, 12/1977, 12/1980, 12/1983, 12/1986, 10/1994, 7/1999 - Off Property, 6/2008 - POP and OP, 8/2010 - POP, 12/2011 - POP, 12/2012 - POP, 6/2013 - DL(OP) |
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#439 | |
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DIS Dad #481
Unfortunately my smartphone is smatter than I am All that fresh air over the years has done me good Join Date: Jul 2010
Location: Kentucky
Posts: 2,304
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May/June 98 - All Star Music Calypso
July 03 - All Star Music Rock ![]() Sept/Oct 05 - POP Century 50's Sept/Oct 06 - POR Riverside Alligator Bayou July 08 - POR Riverside Magnolia Bend |
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#440 |
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DIS Dad #215
Carpe Bacon And no more candy and caffeine for the rest of you Join Date: Aug 2008
Location: Maryland, Land of Merry!
Posts: 10,215
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Ben will keep your DD, you and your family in our prayers!
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#441 | |
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DIS Dad#341
Savvy! I have yet to snag one of those recliner seats right in front of the big screen TV Join Date: Jul 2009
Location: Kentucky
Posts: 10,885
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Quote:
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DIS Dad #341
WDW Commando #187 Disneytopia LIVE! October 2012 Trip Report ![]() Randall found in my mailbox. ![]() |
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#442 | |
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DIS Dad#543
You trying for ownage?! I'm not sure what I'll be tied up in at home tonight Join Date: Nov 2010
Location: Ohio
Posts: 2,406
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Will pray not only for you and your DD but also that the insurance company cooperates!
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Me
DW DD5 DD3 ![]() ![]() ![]() Dis Dads Member #543 April 2012 Spring Break TR Trips:January 2013 (OKW), April 2012 (BLT) MK Only (1 day visits) - 2013, 2011, 2010, 2009, 2008 Offsite - 2013, 2005, 1989 |
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#443 |
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DDC
![]() Maybe the entire internet is slowing down because of this thread Join Date: Nov 2008
Location: CT
Posts: 11,330
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Ben, I'm glad they were finally able to give you a diagnosis.
Sending out thoughts & prayers to your family.
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![]() Nemesis Challenge: No Pain, No Gain. A ½ Marathon 2013 TR -JUST STARTED! This is the last trip the 4 of us ever take to WDW. TR ~In Progress~ DISDad MEMBER #330 Just when you thought you've seen all the MAGIC!! A WISH for Cold Tea? Ana's aMAWzing Disney Trip! Family, Friends, & Celebrities- A MAGICAL Birthday Sweating through 6 days at POP 'I think we ate at every character meal' TR |
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#444 |
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DIS Dad #215
Carpe Bacon And no more candy and caffeine for the rest of you Join Date: Aug 2008
Location: Maryland, Land of Merry!
Posts: 10,215
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Ben, with my Rheumatoid Arthritis I do remicade. I was offered humira, which is self injected, but liked the idea of the remicade because it was a infusion under a Doctors care. It takes about two hours every 8 weeks, and works great. I've never had trouble with my insurance to pay for it. Again prayers for your DD for a Long and Full Life!
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DDC 188
I love that middle crease between the two straight sections It's a secret passge to a man cave Join Date: Jul 2007
Location: Central Indiana
Posts: 6,938
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(me - David) (DW) & = 8 yrs old (twins) DisDad Member #188 ![]() We're adopting!! Updated - 5/5! Follow the adventure at: http://nicelyfamilyadoptionadventure.blogspot.com |
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DDC 172
"Insert clever tag fairy saying here" You really think I'm clever? Join Date: Oct 2007
Location: Southern Ohio
Posts: 3,479
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We Are.....Marshall!!!: DisDads Club Member #172 DH Steve (46) DW Shari (45) DS Ethan (7) DD Lauren (6) ![]() |
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#447 |
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DIS Veteran
Join Date: Apr 2011
Location: WA
Posts: 541
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Ben, you and your DD and your family are in our prayers.
Kevin
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DVC since 1997 - OKW, 2010 - BLT
1st DCL Cruise Alaska Disney Wonder 5/24/2010 Fantasy 12/8/2012-Western, 12/15/2012-Eastern Wonder 5/27/2013-Alaska Magic 9/8/2014-WBTA DIS Dad's Club Member 685 |
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#448 |
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Join Date: Jan 2011
Location: Carlsbad, NM
Posts: 1,228
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Ben.. your daughter and your family will be in our prayers. I am living proof that a "lifetime diagnosis" does not have define our lives. Crippled at a young age from an incurable spinal disease, I have lived a pain-free life due to the grace and mercy of God.
Hang in there, and cherish every moment. Life can be tough, but experiencing it with the ones you love is truly priceless
__________________
![]() 1999-2005 yearly DLC trips - various non-Disney hotels 2006 - DLC - Paradise Pier Hotel *Joined DVC! 2007 - Disney Cruise & WDW for our 20th wedding anniversary 2008 - DLC - Grand Californian 2009 - WDW- Old Key West & Animal Kingdom-Kidani 2010 - WDW- Beach Club & Animal Kingdom 2011 - Disney Cruise - the new Disney Dream & Holidays @ WDW! BCV & AKV Concierge April 2012 - MR Anniversary Cruise Nov 2012 - DLC to see Holidays & "WoC" May 2013 - Aulani Here We Come!! |
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#449 | |
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Mouseketeer
Join Date: Sep 2011
Location: Cedar Falls, IA
Posts: 174
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We will learn from her strength.
__________________
Me - Ben (DISDad #662) , DW , DD12 , DD9 , and DS5 ![]() 12/1974, 12/1977, 12/1980, 12/1983, 12/1986, 10/1994, 7/1999 - Off Property, 6/2008 - POP and OP, 8/2010 - POP, 12/2011 - POP, 12/2012 - POP, 6/2013 - DL(OP) |
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#450 |
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DDC 400
Remember, it's ok to cry a little. Not too much, just a little Join Date: Feb 2008
Location: Richmond, VA
Posts: 1,180
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This made me smile. Good for her.
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me
Chris (39)DW (37)DD (8)DS (6) DD (3) DIS Dad #400 |
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