SORRY! I'VE BEEN TRYING TO POST A MESSAGE FOR A WEEK NOW. MY COMPUTER ISN'T AGREEING WITH ME IT SEEMS.

MY NAME IS AMANDA AND I HAVE A DAUGHTER WITH SWCAH HER NAME IS REBECCA, AND SHE WILL BE 2 YEARS OLD IN APRIL.  OUR STORY ISN'T THAT MUCH DIFFERENT FROM EVERYONE ELSES. WHEN REBECCA WAS BORN WE WERE TOLD SHE NEEDED SOME TEST RAN BUT EVERYTHING LOOKED FINE BUT WHEN TEST CAME BACK THEY WOULD KNOW MORE.  THE SAME DAY THEY CHECKED HER CHROMOSOMES AND DID A PELVIC EXAM TO ENSURE THAT SHE HAS BOTH OF HER OVARIES. AND OF COURSE SHE DID SO THEIR ANWSER WAS THAT WE MAY NEED TO HAVE A LITTLE PLASTIC SURGERY BUT EVERY THING WAS GOING TO BE FINE.

SO IN ONE WEEK WE FOLLOWED UP WITH THE PEDTRICAN. STILL NOT HAVING A CLUE THAT SOMETHING WAS WRONG HE ASKED IF WE HAD SPOKEN TO THE ENDOCRINOLOGIST YET. WE LOOKED AT HIM LIKE HE WAS CRAZY. HE SAID WELL YOU REALLY NEED TO TRY TO SET UP AN APPOINTMENT, SO WE SAID OK. AS SOON AS I GOT HOME I CALLED THE NUMBER HE GAVE US TO SET IT UP. I WAS TOLD IT WOULD BE AT LEAST 2 MONTHS BEFORE SHE COULD BE SEEN. STILL NOT KNOWING IT WAS ANY KIND OF HURRY WE SAID OK JUST SET IT UP.

THE NEXT PEDTRICAN THE FOLLOWING WEEK HE NOTICED HER WEIGHT LOSS WHICH WAS ONE FOURTH OF A POUND AND HE ASKED ONCE AGAIN ABOUT THE ENDO VISIT AND I TOLD HIM WHAT THEY HAD TOLD US AND HE WAS FURIOUS. HE LEFT FOR A FEW MINUTES AND RETURN TO TELL US THAT WE NEEDED TO TAKE BECCA NOW! WE ASKED WHY AND HE TOLD US HE WAS CONCERNED ABOUT HER WEIGHT LOSE WHICH NOW THAT I LOOK BACK I SURE HE KNEW HE JUST WOULDN'T TELL US.

SO I CALLED MY HUSBAND MY MOTHER-IN-LAW WAS WITH US AND HE MEET US THERE. WE WAITED 6 HOURS TO BE SEEN. KEEP IN MIND WE STILL KNEW NOTHING AND WHEN WE WERE FINALLY CALLED BACK WE WERE TOLD BY A STUDENT RESIDENT ABOUT SWCAH, HE TOLD US HE WASN'T CERTAIN BUT THEY HAD TO RUN BLOOD TEST TO BE SURE. THEY PUT IN IV IN BECCA'S ARM I'LL NEVER FORGET MY BABY NOT EVEN 3 WEEKS OLD AND A IV IN HER ARM. SURE ENOUGH HE WAS RIGHT WE STAYED IN HOSPITAL FOR 4 OF THE LONGEST DAYS OF MY LIFE. WHEN WE FINALLY GOT TO TALK TO THE ENDOCRONOLGIST HE EXPLAINED EVERYTHING  STILL WE DID NOT UNDERSTAND THE SURVIRITY OF EVERYTHING UNTIL MY MOTHER IN LAW ASKED IF BECCA GOT ALL OF HER MEDICINE IF SHE WOULD LIVE AND HE SAID"DON'T ASK QUESTIONS YOU DON'T WANT THE ANWSER TO". I THOUGHT I WAS GOING TO LOSE IT!

WELL AFTER WE WERE SHOWN HOW, WHEN, TO GIVE HER MEDICINES AND WHAT TO DO IF THERE WERE AN EMERENCY WE WERE ON OUR WAY HOME. AFTER ALOT OF TEARS AND ALOT OF WONDERING WHY MY BABY WE LEARNED TO EXCEPT EVERYTHING AS A BLESSING THAT SHE WAS STILL WITH US. THEY TOLD US THAT 1 DAY LATER AND SHE WOULDN'T HAVE BEEN. I DIDN'T CARE ABOUT THE MEDICINE OR ANY OF THE OTHER THINGS THAT COMES WITH CAH I WAS JUST GLAD TO HAVE MY LITTLE GIRL.

WE'VE BEEN HAVING BLOOD TEST EVERY ONE TO TWO MONTHS FOR THE PAST 2 YEARS. AND I'VE CRIED MANY TIMES WHEN THEY'VE STUCK HER BUT I KNOW IT'S FOR THE BEST BUT IT HURTS ME TO KNOW THERE'S NOTHING I CAN DO EXCEPT HOLD HER DOWN AND HOPE THEY GET IT SOON SO I CAN HOLD HER AND CALM HER DOWN. SHE'S WONDERFUL WITH HER MEDICINE AND MOST DOCTOR VISITS SHE DOESN'T LIKE THEM TOUCHING HER HEAD AND SHE HAS NO PROBLEM LETTING THEM KNOW.

MY HUSBAND AND I HAVE DISCUSSED HAVING ANOTHER LITTLE ONE AND I WAS VERY SCARED AT THE THOUGHT OF GOING THROUGH ALL THIS AGAIN. BUT I'VE DECIDED THAT IT WILL BE WORTH BECCA HAVING A LITTLE BROTHER OR SISTER THAN ME BEENING SCARED. REBECCA IS BEST THING THAT HAS HAPPENED TO ME AND MY HUSBAND. AND EVEN IF WE HAVE  HAVE ANOTHER BABY WITH CAH IT CAN'T DO ANYTHING BUT MAKE OR LIFE WHOLE.

SO THIS IS MY STORY I HOPE IT HELPS YOU BETTER UNDERSTAND THE PARENTS  POINT OF VIEW.

                                                                                                          THANKS FOR ASKING