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Old 06-14-2009, 09:55 PM   #1
ALOUDWHISPER
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Join Date: Aug 2007
Posts: 123
ANYONE FAMILIAR...FIBULAR HEMIMELIA?

I'VE NEVER POSTED ON HERE NEVER REALLY THOUGHT ABOUT IT I'M JUST CURIOUS IF THERES ANYONE THAT KNOWS ABOUT HAS A CHILD OR MAYBE A FAMILY MEMBER WITH FIBULAR HEMIMELIA.

MY DAUGHTER MAKANI WAS BORN 5-15-07 & TO BREAK DOWN WHATS "WRONG" SHE IS MISSING HER RIGHT FIBULA & HER RIGHT FEMUR IS SHORTENED THIS MAKES HER KNEES IN DIFFERENT SPOTS & HER RIGHT LEG IS SKINNIER DUE TO ALL OF THIS, WE'VE SEEN SEVERAL ORTHOPEDICS WHOM CAN'T SEEM TO KEEP STORYS STRAIGHT OR JUST DON'T HAVE ANY GOOD RECOMENDATIONS, I WANT TO SAY MORE THAN NOT FH KIDS ARE AMPUTEES ALOT ARE MISSING TOES OR HAVE A BOWED LEG ETC.... MAKANI HAS A PERFECT LEG A FOOT WITH 5 TOES SHES JUST MISSING & LACKING THINGS LOL SHE WAS PLACED IN A BRACE WITH A LIFT AT 8MTHS OLD & SHE HATED ITREFUSED TO TRY TO WALK ON IT SHE COULD'T BALANCE WELL & I WAS TRYING TO GET HER TO HER ORTHO TO MAKE SURE IT WAS OK WELL DUE TO INSURANCE THIS TOOK MONTHS I HAD DECIDED IT WASN'T HER BEST OPTION WE SAW ANOTHER ORTHO WHO AGREED HE NEVER WOULD HAVE PUT THAT ON HER AFTER THAT SHE WORE A SHOE ON HER RIGHT FOOT & STAYED BAREFOOT ON LEFT SHE WAS WALKING AT 14MTHS OLD SHE IS NOW 25MTHS OLD & KEEPS UP LIKE ANY OTHER CHILD BUT THE LLD HAD NOW INCREASED FOR THE FIRST TIME IT WAS STABLE AROUND 5CM NOW IT'S LIKE 7CM I BELIEVE & SHE GOES TO SHRINERS ON THE 29TH I'M HOPING THEY WILL HAVE A PLAN BUT IDK JUST HOPING TO FIND MORE PEOPLE GOING THROUGH THIS.

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