THERAPY

ETHAN HAS BEEN STRUGGLING LATELY IN THERAPY. NOT SURE IF IT IS JUST BECAUSE HE HAS THE MUSCLE TONE NOW TO THROW FITS SO HE DOES, OR IF HE IS TRULY GETTING FRUSTRATED.

SPEECH THERAPY IS PROGRESSING VERY SLOWLY.... BY FAR THE MOST FRUSTRATING THERAPY OF THEM ALL.... YOU CAN'T MAKE SOMEONE DO IT. I KNOW THAT VOCALIZED SPEECH IS GOING TO TAKE A WHILE AND I HAVE PREPARED MYSELF FOR THAT, BUT ETHAN DOESN'T SEEM TO INTERESTED IN SIGN EITHER. HE GOT HIS FIRST WORD WHICH IS "PLEASE" DOWN, BUT NOW HE USES IT FOR EVERYTHING.  WE ARE WORKING OF "EAT" AND " MORE" AND EVERYTIMES ETHAN JUST SAYS "PLEASE".... I GUESS IT ISN'T A BAD ONE TO USE FOR EVERYTHING, AT LEAST HE IS BEING A GENTLEMEN :)

ANYWAY PHYSICAL THERAPY ISN'T AS FRUSTRATING BECAUSE I SEE SOME LITTLE IMPROVEMENTS EACH WEEK. I MEAN THE LITTLEST IMPROVEMENT GIVES ME THAT FEELING LIKE " HE WILL GET THERE IT WILL JUST TAKE TIME". I GET EXCITED IF ETHAN IS ABLE TO HOLD HIMSELF UP 1 SECOND LONGER THAN HE DID THE WEEK BEFORE, AND I GET EXCITED IF WE GET THROUGH THERAPY WITH LESS MELTDOWNS THEN THE WEEKS BEFORE.  2 WEEKS AGO IT WAS HIS SURE STEPS AND ANKLE BRACES HE GOT AND THIS WEEK THE THERAPIST BROUGHT HIM A PAIR OF HIP HELPERS ( A PAIR OF SPANDEX THAT ARE CONNECTED IN THE MIDDLE SO HE ISN'T ABLE TO SPREAD HIS LEGS) THESE ARE MAINLY USE TO KEEP HIM IN THE CRAWLING POSITION SINCE HIS LOW TONE MAKES HIS LEGS FROG OUT.  SEEMS LIKE LATELY THE THERAPIST HAS BEEN BRINGING HIM LOTS OF PRESENTS, MAYBE NOT THE PRESENTS ETHAN IS LOOKING FOR BUT SOME GREAT TOOLS TO MAKE HIM STRAONGER. I AM EXCITED TO SEE HIS PROGRESS WITH BOTH THE SHOES AND NOW THE HIP HELPERS.

NEXT ON OUR LIST IS TO FIND A NEW OCUPATIIONAL THEARPIST, SINCE OUR LAST ONE IS NO LONGER WITH THE COMPANY. I THINK THIS WILL ALSO HELP WITH HIS MOTOR SKILLS SENSORY ISSUES AND EVEN SPEECH.


WE ARE ALSO LOOKING INTO GETTING ETHAN INTO HIPPOTHERAPY, I THINK HE WOULD LOVE IT AND WOULD REALLY BENEFIT FROM IT. IT SUCKS THERE IS A WAITING LIST AND ALSO THEY OF COURSE DON'T HAVE ANY ON THE WEEKENDS. NOT ONLY IS IT ON WEEKDAYS BUT THE  ONE IS AT LEAST AN HOUR AWAY FROM OUR HOUSE. SOMETIMES I JUST DON'T GET HOW PARENTS THAT WORK CAN GET ALL THIS DONE. THERAPIES ARE NEVER ON WEEKENDS, THEY WORK FROM 8-5 AND OUR THERAPIST HAVE FRIDAYS OFF. I WANT THE BEST FOR MY CHILD BUT I STILL HAVE TO KEEP MY JOB AND CAN'T TAKE OFF EVERY SINGLE DAY.

WELL THERE YOU GO, A LITTLE UPDATE ON ETHAN'S BUSY BUSY SCHEDULE. I AM OFF TO BUY A LOTTO TICKET SO HOPEFULLY ONE DAY I CAN STAY AT HOME WITH ETHAN AND GET HIM TO ALL HIS APPOINTMENTS :)

PICS OF ETH IN HIS HIP HELPERS AND SURE STEPS

THE FIRST ANNUAL ETHAN MAC INVITATIONAL= AMAZING

LET ME JUST START BY SAYING WHAT AN AMAZING DAY.... SERIOUSLY, I WAS OVERWHELMED BY THE AMOUNT OF PEOPLE WHO CAME TO SUPPORT US AS A FAMILY. WE HAVE THE BEST FAMILY AND FRIENDS ANYONE COULD ASK FOR. WE HAD SUCH A GREAT TURN OUT AND RAISED ENOUGH MONEY TO PAY OFF   OUR MEDICAL BILLS. IT AMAZED ME HOW GENEROUS PEOPLE ARE, NOT ONLY FOR THEIR DONATIONS BUT FOR THEIR KIND WORDS AND FOR THEIR SUPPORT THROUGH ALL OF THIS.

WE WOULD LIKE TO THANK ALL WHO DONATED, WHO SHOWED UP TO PLAY, WHO CAME TO PARTICPATE IN THE RAFFLES AND MOST IMPORTANTLY TO ALL THE VOLUNTEERS THAT MADE THIS HAPPEN FOR US. I HAVE NEVER BEEN A PART OF SOMETHING THAT HAS MEANT SO MUCH TO ME. I HAVE NEVER SEEN SO MANY PEOPLE COME OUT TO SUPPORT A LITTLE BOY THAT GOT DEALT A ROUGH HAND. I WISH ETHAN WERE ACTUALLY OLDER SO HE COULD HAVE UNDERSTOOD ALL THOSE PEOPLE WERE THERE FOR HIM, AND HE WOULD HAVE BEEN ABLE TO UNDERSTAND HOW LUCKY WE ARE.

IT FEELS SO GOOD TO HAVE THE EXTRA WEIGHT OF MEDICAL CREDITORS OFF OUR SHOULDERS. THIS YEAR HAS BEEN... LETS SAY AN EXPENSIVE ONE, AND WHEN YOUR CHILD IS SICK, NEEDS SURGERIES, THERAPIES OR WHATEVER IT IS YOU DON'T CARE HOW MUCH IT WILL COST. YOU WILL GO INTO LIFE LONG DEBT TO MAKE YOUR CHILD THE BEST HE CAN BE. NOW THAT BEING SAID I CAN NOT TELL YOU HOW ANNOYING, HOW SCARY, AND HOW SOMETIMES OVERWHELMING IT CAN BE TO GET MEDICAL BILL AFTER MEDICAL BILL. THE PHONE CALLS SEEMED LIKE THEY WOULD NEVER STOP AND IT SEEM LIKE WE WOULD NEVER BE ABLE TO DIG OUR WAY OUT.

LUCKY FOR US WE HAVE AN INCREDIABLE GROUP OF PEOPLE IN OUR LIVES THAT SAW OUR STRUGGLES AND PUT TOGETHER THIS TOURNAMENT. SO THANK YOU EVERYONE!!!


NOW A RECAP OF THE TOURNAMENT:
SEPTEMBER 24TH
8:45 TEE TIME/ SHOTGUN START
EVERYONE BUT ONE PERSON SHOWED UP
WEATHER WAS PERFECT 84 DEGREES
OUR FAMILY HAD OUR PWS SHIRTS ON TO SUPPORT ETH
ETHAN GOT TO MEET A LOT OF NEW FRIENDS
LUNCH WAS GREAT
RAFFLES WERE A HUGE HIT
PEOPLE WERE GENEROUSLY DONATING ALL DAY LONG
SO MANY OF OUR CLOSED FRIENDS SHOWED UP
SO MANY PEOPLE WE HAVE NEVER MET SHOWED UP
GIFT BAGS WERE HANDED OUT
AN AMAZING COURSE WITH AN AMAZING STAFF


NOW TIME FOR SOME PICTURES

SUCH AN EXCITING MILESTONE

JUST HAD TO WRITE QUICK LINE TO LET EVERYONE KNOW ETHAN SAYS "MAMA" NOW. YOU HAVE NO IDEA HOW CUTE IT IS. HE MAINLY ONLY SAYS IT WHEN HE CRIES AND WANTS SOMETHING , AND OF COURSE ME BEING SO HAPPY HE IS SAYING MAMA HE USUALLY GETS WHAT HE WANTS. I KNOW THAT CAN'T LAST FOREVER BUT FOR NOW HE HAS MY NUMBER. IT JUST MELTS MY HEART I LOVE IT!

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.

THE LATEST

ETHAN SIGNED HIS FIRST WORD TUESDAY! DURING SPEECH THERAPY HE LEARNED HOW TO SIGN " PLEASE". I WAS SO EXCITED. IT IS YET ANOTHER MILESTONE HE IS REACHING THAT IS DIFFERENT FROM THE AVERAGE 13 MONTH OLDS, BUT IS SO EXCITING IN OUR HOUSEHOLD. IT IS HIS WAY OF COMMUNICATING FOR NOW AND IT MAKES ME SO PROUD HOW HARD HE WORKS DURING THERAPY, AND HOW QUICKLY HE CAUGHT ON.

ALSO WE TAUGHT ETHAN HOW TO DRINK OUT OF A STRAW.... I KNOW IT DOESN'T SOUND LIKE A HUGE DEAL, BUT WHEN YOU HAVE BEEN WORKING WITH AN OCCUPATIONAL THERAPIST HIS WHOLE LIFE IT SURE IS. THERE IS A LOT MORE TO DRINKING OUT OF A STRAW THEN YOU WOULD THINK. THERE IS TOUNGE STRENGTH, SUCK REFLEX, SWALLOW REFLEX, AND THEN YOU HAVE TO FIGURE OUT HOW TO PUT THEM ALL TOGETHER SO YOU DON'T CHOKE. NOW ETHAN LOVES DRINKING OUT OF HIS STRAW CUPS WHICH IS GETTING US A STEP CLOSER TO GETTING HIM OFF THE BOTTLE.

AT PHYSICAL THERAPY TUESDAY ETHAN GOT FITTED FOR HIS ANKLE BRACES HE WILL HAVE TO WEAR. BECAUSE OF THE LOW MUSCLE TONE ETHAN HAS NO STRENGTH IN HIS ANKLES WHICH MAKES HIS FEET GO OUTWARDS WHEN HE TRIES TO STAND. THE THERAPIST WANTS HIM TO WEAR THESE ANKLE SUPPORTS SO HE CAN BUILD MUSCLE IN HIS ANKLES SO WHEN ETHAN IS READY TO STAND/WALK HE WILL HAVE THE STRENGTH TO. HOPEFULLY WE WILL GET THE BRACES NEXT WEEK SO HE CAN START GAINING STRENGTH.

ALL AND ALL ETHAN HAD A GREAT WEEK THIS WEEK, HE WENT THROUGH THE THERAPIES LIKE A CHAMP ( NO  CRYING THIS TIME) AND LEARNED TWO NEW THINGS.

Ethan Mac Invitational

I AM SO EXCITED FOR THE FIRST ANNUAL ETHAN MAC INVITATIONAL. KEVIN AND I WOULD NEVER BE ABLE TO EXPLAIN HOW MUCH WE APPRECIATE EVERYONES LOVE AND SUPPORT, ESPECIALLY EVERYONE WHO HAS COME TOGETHER TO PUT THIS TOURNAMENT ON. WE ARE HOPING FOR A SUCESSFUL FIRST YEAR, AND HOPEFULLY A GOOD TURN OUT. YOU CAN FIND THIS INFORMATION ON THE WEBSITE AT
ethanmactournament.info  AS WELL AS ON FACEBOOK.