ANOTHER OBSTACLE

IT IS CONFIRMED ETHAN WILL HAVE TO BE IN A SPICA CAST FOR 16 WEEKS TO CORRECT HIS DISLOCATED HIP.

JUST WHEN WE THOUGHT THAT ETHAN HAS ENDURED HIS SHARE OF HOSPITAL STAYS AND SURGERIES ANOTHER ISSUE HAS COME UP.

WE DISCOVERED A FEW WEEKS AGO THAT ETHAN'S LEFT LEG WAS SHORTER THAN HIS RIGHT LEG ABOUT TWO INCHES. WE ASKED THE ENDOCRONOLGIST ABOUT IT AND HER FIRST THOUGHT WAS HIS SPINE MAYBE CROOKED ( PWS KIDS ARE OFTEN DIAGNOSED WITH SCOLIOSIS). THEN A WEEK LATER WE HAD AN APPOINTMENT WITH THE GOOD LIFE CLINIC, AND THERE THEY ASKED IF THERE WAS ANYTHING ELSE WE WERE CONCERNED ABOUT. WHEN WE TOLD HER ABOUT HIS LEG SHE DID THE "HIP TEST" WHICH SHOWS A DOCTOR IF HIS HIPS ARE WHERE THEY NEED TO BE. WHEN SHE DID THE TEST WITH ETHAN HIS HIP POPPED COMPLETLY OUT OF SOCKET. WHAT SHE DISCOVERED WAS EVERY TIME HE MOVES HIS LEG IT POPS IN AND OUT OF SOCKET. SO THIS IS WHERE SHE TELLS US OUR OPTIONS.

WHEN SHE TOLD US THAT ETHAN WOULD EITHER HAVE TO BE IN A FULL BODY HARNESS, OR A BODY CAST I WANTED TO THROW UP. JUST THE THOUGHT OF MY LITTLE MONKEY HAVING TO BE IN ONE OF THOSE GOD AWFUL CASTS OVER THE SUMMER MADE ME SICK.  HOW DO YOU EXPLAIN TO YOUR 9 MONTH OLD WHY HE CAN'T MOVE HIS LEGS FOR 4 MONTHS? THEN SHE STARTED TELLING US ABOUT KIDS WHO DIDN'T CATCH THIS PROBLEM IN TIME THAT ARE MUCH PAST WALKING AGE THAT STILL CAN NOT WALK BECAUSE OF IT. OBVIOULSY I WANT WHAT IS BEST FOR MY KID AND THESE ARE OUR ONLY OPTIONS WE HAVE TO DO IT.

THE LAST TWO WEEKS I HAVE BEEN PRAYING THEY WOULD GIVE HIM THE HARNESS INSTEAD OF THE CAST. IT IS A LITTLE EASIER TO MANOUVER, EASIER TO DRESS THEM, DIAPER THEM, AND SPONGE BATH THEM.

WE HAD OUR APPOINTMENT WITH THE ORTHOPEDIC SURGEON YESTERDAY, AND IN ETHAN'S CASE HE NEEDS THE BODY CAST..... OF COURSE RIGHT, WHY IN THE WORLD WOULD I THINK HE COULD CATCH A BREAK? NOW WE ARE JUST HOPING THAT THIS DOES THE TRICK, IF THIS DOESN'T WORK HIS NEXT OPTION IS HIP SURGERY.

WE WILL BE GETTING THE CAST PUT ON THURSDAY 4/14/2010 AT 2:00PM AT CHILDREN'S HOSPITAL. IT ISN'T QUITE AS EASY AS JUST GETTING A CAST. ETHAN ACTUALLY HAS TO BE PUT UNDER ANESTHESIA, THEN THEY HAVE TO INJECTED A DYE INTO HIS HIP TO MAKE SURE WHERE HIS SOCKET IS, IN SOME CASES THEY HAVE TO MAKE AN INCISION IN HIS GROIN TO MOVE HIS TENDON OUT OF THE WAY. THEN THEY CAST HIM, AND KEEP HIM OVERNIGHT FOR EVALUATION.   PWS CHILDREN HAVE A REALLY HARD TIME GOING UNDER ANESTHESIA AND IT CAN BE VERY DANGEROUS FOR THEM, I WISH  THERE WERE A WAY TO DO THIS WITH OUT PUTTING HIM UNDER.

ETHAN WILL WEAR HIS FIRST CAST FOR 6 WEEKS, AND THEN WE WILL GO BACK TO CHILDREN'S GET PUT UNDER ANESTHESIA AGAIN INJECT DYE INTO HIS HIP AGAIN TO SEE IF IT IS WORKING. IF IT IS WORKING THEY PUT A NEW CAST ON FOR 6 WEEKS REPEAT THE PROCESS AT  6 WEEKS AND HE WILL HAVE ANOTHER CAST FOR 4 WEEKS. AFTER THE 4 WEEKS HE WILL HAVE A BRACE.  SO WE ARE LOOKING AT AT LEAST 4 TIMES GOING UNDER ANESTHESIA AND 16 WEEKS OF CASTING AND A BRACE AFTER.  IF IT DOESN'T LOOK LIKE IT IS WORKING AFTER THE FIRST 6 WEEKS WE NEED TO DO THE HIP SURGERY.

ALL OF THIS IS A LOT TO TAKE IN ALL I CAN THINK IS HOW HOT HE IS GOING TO BE ALL SUMMER, HOW MUCH FURTHER HE IS GOING TO BE BEHIND NOW WITH OUT BEING ABLE TO DO THERAPY , OR SIT OR CRAWL, HOW DIFFICULT IT IS GOING TO BE NOT TO GIVE HIM A BATH FOR 4 MONTHS, HOW WILL WE CHANGE HIS DIAPERS, HOW DO YOU DRESS HIM, AND HOW DO YOU CALM HIM DOWN WHEN HE IS CRYING BECAUSE HE CAN'T MOVE. THERE IS JUST SO MUCH TO THINK ABOUT SO MUCH TO PREPARE FOR IN THE NEXT TWO DAYS. LUCKLY CHILDREN'S HOSPITAL HAS AGREED TO LET US RENT A SPECIAL CAR SEAT HE WILL BE ABLE TO FIT IN SO WE DON'T HAVE TO GO BUY ONE ( THEY ARE 700.00 ).  WE WILL HAVE TO WAIT AND SEE IF HE WILL FIT IN ANY OF OUR STROLLERS, BUT I DON'T THINK THAT WILL BE A PROBLEM.

HOPEFULLY WE ARE LOOKING BACK AT IT IN 4 MONTHS AND BEING SO HAPPY WE MADE THIS CHOICE. HOPEFULLY WE CAN ESCAPE THIS JOURNEY WITHOUT ANOTHER SURGERY. ETHAN WILL GET THROUGH IT BECAUSE HE IS  THE THOUGHEST KID I KNOW, NOW ME AND KEVIN HAVE TO STEP IT UP AND TRY TO BE AS TOUGH AS HE IS.

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