HARD WEEK THIS WEEK

FOR SOME REASON THIS WEEK I HAVE BEEN HATING PWS MORE THAN USUAL. NOT SURE WHAT EXACTLY MADE IT WORSE THAN ANY OTHER WEEK, BUT I HAVE BEEN MORE EMOTIONAL ABOUT IT.

EVERYONE ALWAYS SAYS EVERY KID IS DIFFERENT AND YOU CAN'T COMPARE AND BLAH BLAH BLAH, BUT EVER PARENT DOES IT.  I THINK I HAVE BEEN PRETTY GOOD ABOUT NOT COMPARING ETHAN'S PROGRESS WITH THE AVERAGE CHILD, BECAUSE THAT IS JUST NOT FAIR. MY PROBLEM NOW IS COMPARING HIM TO OTHER PWS KIDS.

LET ME REPHARSE THAT, I AM NOT SO MUCH COMPARING AS I AM JUST GETTING CONCERNED WHEN I SEE OTHER PWS KIDS PICKING UP ON STUFF QUICKER THAN ETHAN. IT MAKES ME FEEL LIKE I AM NOT DOING SOMETHING RIGHT. IT MAKES ME WONDER HOW FAR HIS SPICA CAST HAS PUT HIM BEHIND.

MY MAIN CONCERN RIGHT NOW IS CRAWLING. HE JUST DOESN'T SEEM INTERESTED AT ALL. I KNOW 14 MONTHS ISN'T FAR BEHIND FOR A CHILD WITH PWS I JUST WISH I SAW SOME MOTIVATION TO WANT TO CRAWL. THE OTHER DAY I FELT MYSELF ON THE BRINK OF TEARS AS ETHAN DID PT. IT BROKE MY HEART TO SEE MY CHILD HAVE TO WORK SO HARD AT SOMETHING THAT SHOULD BE SO SIMPLE. IT IS DIFFICULT TO PUSH YOUR CHILD SO HARD THAT THEY CRY AND DON'T UNDERSTAND WHY YOU HAVE TO PUSH THEIR LITTLE BODY SO MUCH.  WE HAVE BEEN DOING PT HIS WHOLE LIFE SO WHY THIS WEEK HIT ME HARDER, I AM NOT SURE. I FELT FRUSTRATED. NOT FRUSTRATED WITH ETH BUT FRUSTRATED WITH PWS AND THE BURDEN IT HOLDS OVER MY SON.

WE ALSO RECEIVED ETHAN'S SURE STEPS THIS WEEK. ANYONE THAT DOESN'T KNOW WHAT SURE STEPS ARE THEY ARE LITTLE ANKLE BRACES THAT ARE FITTED TO THEIR FEET TO HELP THEIR ANKLES WITH SUPPORT AS WELL AS HELPING THEM STAND STRAIGHT. THEY ALSO GIVE YOU A PAIR OF SURE STEP SHOES THAT ETHAN CAN WEAR WITH HIS BRACES. ETHAN'S ANKLES WERE SO WEAK THAT IS FEET WOULD AUTOMATICALLY GO OUTWARD WHEN HE WOULD TRY TO STAND.  THE GOOD THING ABOUT THE BRACES IS ETHAN DOESN'T SEEM TO MIND THEM. HE ACTUALLY LOVES THE SHOES, BECAUSE ANYONE WHO KNOWS ETHAN KNOWS HIS OBESSESION WITH SHOE STRINGS OR ANY STRING.

THE SHOES AND BRACE HAVE FOR SURE MADE A DIFFERENCE WITH HOW HE STANDS AND I THINK WILL REALLY HELP IN THE LONG RUN, BUT THEY HAD ALSO CAUSED ANOTHER I HATE  PWS MOMENT THIS WEEK.

YESTERDAY WE WERE AT THE EYE DOCTOR WITH ETHAN AND WAITING IN THE WAITING ROOM . I KEPT FEELING ANOTHER PARENT STARE AT US, AND WHEN I LOOKED OVER I NOTICED HE WAS STARING AT HIS BRACES ON HIS ANKLES. IT MADE ME SAD THAT PEOPLE DO THIS AND EVEN MADE ME MORE SAD TO THINK ABOUT ALL THE STARES ETHAN WILL GET IN HIS LIFE TIME. LUCKLY FOR ME ETHAN HAS NO CLUE THAT PEOPLE ARE AS RUDE AS THEY ARE, BUT IT MAKES ME HURT FOR HIM.IT BRINGS ME BACK TO THE FEELINGS I HAD THE FIRST DAY WE GOT THE DIAGNOSES AND THE ANXIETY I FELT OVER HOW OTHERS WILL TREAT MY CHILD. IT'S SCARY.

YESTERDAY WE WENT TO THE EYE DOCTOR AS I SAID BEFORE BECAUSE HIS PEDIATRICIAN WANTED HIM TO GET HIS EYES CHECKED. ANOTHER THING PRADER WILLI  CAN EFFECT. IT IS COMMON IN PRADER WILLI TO HAVE EYE PROBLEMS, AN LAZY EYE, CROSSED EYES, OR POOR VISION.  LUCKLY WE FOUND OUT THAT ETHAN DOESN'T HAVE ANY ISSUES WITH HIS EYES BEING LAZY OR CROSSING, WHICH WE KINDA ALREADY KNEW. THE BAD NEWS IS ( WHICH ISN'T REALLY PWS REALTED, IT COULD HAPPEN TO ANY CHILD) THAT ETHAN HAS ASTIGMATISM IN EACH EYE AS WELL AS NEAR SIGHTNESS IN BOTH EYES.

THE DOCTOR SAID THE ASTIGMATISMS CAN GET BETTER UP UNTIL HE IS 2 YEARS OLD, SO HE WANTS TO WAIT TO GET ETHAN INTO GLASSES UNTIL NEXT SUMMER, AS FAR AS THE NEAR SIGHTNESS GOES IT WILL ONLY GET WORSE SO FOR SURE HE WILL NEED THE GLASSES.  IT MAKES ME SAD FOR HIM TO THINK THAT NEXT SUMMER WHEN HE IS JUST TURNING 2 YEARS OLD HE WILL ALREADY BE IN GLASSES. I DON'T KNOW HOW YOU EVEN GET A 2 YEAR OLD TO KEEP GLASSES ON. I GUESS WE HAVE A WHOLE YEAR UNTIL WE HAVE TO WORRY ABOUT IT BUT IT WAS STILL A BUMMER TO HEAR. ALL I WANTED WAS JUST FOR ONCE TO HEAR THE DR. SAY EVERYTHING LOOKS GREAT.  I FEEL LIKE IT IS JUST ONE MORE THING ADDED TO ETHAN'S LONG LIST OF CHALLENGES.