LESSON LEARNED

SO I WAS LOOKING THROUGH OUR "JUNK DRAWER" TRYING TO FIND EARPHONES FOR MY IPOD, WHEN I CAM ACCROSS MY " DIRECTIONS FOR ETHAN'S FEEDING TUBE". WHEN ETHAN USED HIS FEEDING TUBE ( UNTIL HE WAS 3 MONTHS OLD) I WROTE OUT STEP BY STEP DIRECTIONS FOR ALL OF OUR FAMILY THAT WOULD BE WATCHING HIM. SO I FOUND THESE STUFFED IN THE " JUNK DRAWER" AND COULDN'T BELEIVE HOW LONG AGO THAT SEEMED.

IT BROUGHT ME BACK TO THOSE EARLY DAYS OF DOUBT THAT ETHAN WOULD NEVER BE ABLE TO EAT ON HIS OWN. THERE WERE DAYS THAT I FELT SO DOWN AND DISCOURAGED AND DAYS THAT IT WOULD TAKE HIM LITERALLY AN HOUR TO GET 2 OUNCES OF MILK DOWN WITH A SYRINGE.

IT ALL SEEMS LIKE A DISTANT MEMORY, IT SEEMS LIKE FOREVER AGO. IT MADE ME OPEN MY EYES TO HOW FAR ETHAN HAS COME, IT IS TRULY AMAZING. HE HAS WORKED SO HARD TO BECOME WHO HE IS TODAY AND I AM SO PROUD OF ALL THE ACCOMPLISHMENTS SO FAR. IT MADE ME REALIZE THAT ALTHOUGH RIGHT NOW IT MAY FEEL LIKE HE WILL NEVER CRAWL OR NEVER WALK, HE WILL. HE WILL DO IT ON HIS OWN TIME, BUT HE WILL DO IT.

I DON'T THINK IT WAS AN ACIDENT THAT I CAME ACROSS HIS FEEDING DIRECTIONS, I THINK IT WAS MORE LIKE A WAKE UP CALL FOR ME. SOMEONE WAS TRYING TO TELL ME TO LET ETHAN DO THINGS ON HIS OWN TIME, CONCENTRATE ON THE THINGS HE CAN DO RATHER THEN THE THINGS HE CAN'T. DON'T EVER LET THE THINGS HE STRUGGLES AT OVER SHADOW THE THE THINGS HE HAS ACCOMPLISHED.

THIS TOO WILL SOON BE A DISTANT MEMORY.... LESSON LEARNED!

NOT ENOUGH TIME TO BE OVERWHELMED

KEVIN STARTED A NEW JOB AND CAN'T TAKE TIME OFF YET FOR ETHAN'S APPOINTMENTS, WHICH I KNOW ISN'T HIS FAULT.I LIKE GOING TO APPOINTMENTS ANYWAYS BECAUSE I NEED TO BE THERE TO ASK QUESTIONS AND HEAR WHAT THE DR. HAS TO SAY. HOWEVER IT HAS BEEN GETTING STRESSFUL FOR ME LATELY. DUE TO ALL ETHAN'S MEDICAL NEED I AM COMPLETLY OUT OF VACATION TIME FOR THE YEAR AT WORK. OUT OF THE 4 WEEK I GET I THINK I HAVE TAKING 1 AND 1/2 ACTUAL VACATION DAYS, AND THE REST HAVE BEEN FOR APPTS.

JANUARY 1ST, AND THE NEW VACATION TIME CAN'T COME SOON ENEOUGH. NOT ONLY AM I COMPLETLY OUT OF TIME AND HAVE  MANY APPTS STILL SCHEDULED      ( I WILL HAVE TO TAKE IT WITHOUT PAY) ETHAN HAS ALSO BEEN SICKER THAN EVER THIS FALL/WINTER. HE TRULY HAS BEEN SICK OFF AND ON NON STOP SINCE SEPTEMBER. EVERY WEEK IT IS SOMETHING NEW. I FEEL SO BAD FOR MY BABY, AND HATE HATE HATE LEAVING HIM WITH THE BABYSISTER ( FAMILY MEMBER BUT STILL) WHILE HE IS SICK.

I FEEL SO GUILTY LIKE A MOM SHOULD BE THERE WHEN HER CHILD IS SICK, IT ISN'T FAIR TO HIM OR THE SITTER BUT YET WE HAVE NO CHOICE. I AM PRYAING TO GOD THAT ETHAN'S IMMUNE SYSTEM GETS STRONGER AND THIS IS JUST FOR THIS YEAR NOT EVERY WINTER OR ELSE I DON'T KNOW WHAT WE WILL DO. SOMETIMES I WISH WE COULD JUST SELL THE HOUSE AND THE CARS AND MOVE INTO AN APARTMENT SO ONE OF US COULD STAY HOME WITH HIM. I JUST DON'T GET HOW OTHERS DO IT.

HOW DO OTHER PARENTS WITH A SPECIAL NEEDS KID STILL WORK FULLTIME JOBS AND STILL HAVE TIME FOR ALL THE APPTS AND THERAPIES AND SUPRISES THAT POP UP. OBVIOUSLY YOUR CHILD COMES FIRST BUT YOU STILL HAVE TO RESPECT YOUR JOB SO YOU CAN BRING HOME A PAYCHECK AND KEEP YOUR CHILD'S INSURANCE.

SOMETIMES IT IS ALL A LITTLE OVERWHELMING AND YOU START FEELING BAD. YOU START THINKING ABOUT IF YOU WERE TO BE A STAY HOME MOM ALL THE NEW DOORS THAT OPEN UP.,ALL THE EXTRA THERAPIES YOU COULD FIT IN OR YOU WOULD FINALLY HAVE  THE TIME TO DRIVE ACROSS TOWN TO ALL THE "BEST OPTIONS" IN THE STATE.

SOMETIMES I WISH THERE WERE JUST MORE HOURS IN THE DAY, OR MORE FLEX IN OUR BUSY SCHEDULES. I KNOW THIS WILL PASS AND THINGS WILL WORK OUT. I AM JUST WAITING TO SEE THE LIGHT AT THE END OF THIS CRAZY TUNNEL.

HOLIDAYS,

THANKSGIVING WAS A LOT OF FUN. WE SPENT TIME WITH BOTH SIDES OF THE FAMILY AND ATE ENTIRELY TOO MUCH FOOD. ETHAN EVEN GOT TO TRY SOME NEW FOODS ON THANKSGIVING, HE TRIED TURKEY, MASHED POTATOES, CRANBERRIES, STUFFING, AND SWEET POTATOES. IT WAS NICE THAT WE COULD PUT HIM IN THE HIGHCHAIR AND FEED HIM WHAT WE ARE EATING. THIS DOESN'T HAPPEN  MUCH SINCE ETHAN IS STILL STRUGGLING TO EAT FINGER FOODS, AND WE AREN'T USUALLY EATING MUCH HE CAN HANDLE. THANKSGIVING ( ATLEAST AT OUR FAMILIES) HAS A LOT OF OPTIONS FOR SOFT EASY TO EAT FOODS .

I KNOW THAT EVERY YEAR ISN'T GOING TO BE SO EASY WHEN IT COMES TO PWS AND THE AMOUNTS OF FOOD SERVED AT HOLIDAYS LIKE THANKSGIVING, BUT THIS YEAR I TRIED NOT TO THINK ABOUT IT AND TRIED TO ENJOY THIS YEAR WITH LITTLE WORRY AS POSSIBLE.

THE NEXT HOLIDAY IS CHRISTMAS AND I CAN'T WAIT, FOR SOME REASON HOLIDAYS WHEN YOU HAVE KIDS SEEM SO MUCH MORE EXCITING. WE GOT THE TREE UP, STOCKINGS HUNG AND THE LIGHTS OUTSIDE UP. I HAVE BEEN LISTENING TO  CHRISTMAS MUSIC FOR WEEKS NOW AND AM TRYING TO GET KEVIN IN THE MOOD. KEVIN DOESN'T UNDERSTAND WHY I LOVE CHRISTMAS, I MEAN HE DOESN'T HATE IT BUT DEFINETLY DOESN'T LIKE IT LIKE I DO. I HAD TO BEG HIM TO PUT THE LIGHTS UP AND HAD TO DRAG HIM TO BUY A NEW TREE THIS YEAR.

WHEN I WAS LITTLE I REMEMBER HAVING THE BEST CHRISTMAS'. MY PARENTS DID SUCH AN AMAZING JOB DECORATING OVERLOADINGS US ON GIFTS AND MAKING THE HOLIDAY FEEL SO SPECIAL. WE HAD OUR FAMILY TRADITIONS AS KIDS THAT WE STILL DO NOW AND I WANT ETHAN TO HAVE THE SAME THING.

I WANT TO MAKE NEW TRADITIONS FOR OUR LITTLE FAMILY AND I WANT TO MAKE IT FEEL SPECIAL FOR HIM. I WANT HIM TO BE EXCITED FOR SANTA, AND WANT TO SEE HIS EYES LIGHT UP AT HIS NEW TOYS. I WANT  HIM TO WAKE UP AND LOOK FOR THE ELF ON THE SHELF EVERY MORNING AND MAKE IT FUN. YOU NEVER GET THESE YEARS BACK AND CHRISTMAS ONLY COMES ONCE A YEAR, SO I WANT TO MAKE IT SPECIAL.

ETHAN IS STILL YOUNG AND MAY NOT CARE MUCH ABOUT SANTA OR THE TOYS YET, BUT THIS YEAR HE IS LOVING CHRISTMAS LIGHTS. HE COULD SIT AND STARE AT OUR TREE FOR HOURS. WE GET TEARS EVERYTIME IT IS TIME TO TURN THE TREE OFF, OR WE WALK OUT OF THE LIVING ROOM.... I MEAN HE LOVVVVVVVVVVVVVES IT.

ALSO CHRISTMAS EVE WILL BE ETHAN'S FIRST TIME AT CHURCH.. I AM ANXIOUS TO SEE HOW HE DOES. HE DOESN'T SIT AND LISTEN FOR LONG PERIODS OF TIMES AND I AM AFFRAID HE IS GOING TO BE A HANDFUL.  I DON'T KNOW HOW MY MOM DID IT TAKING ALL FOUR OF US UNDER THE AGE OF 7 TO CHURCH EVERY SUNDAY BY HERSELF, BUT IF SHE CAN MANGE THAT I LIKE TO THINK I CAN HANDLE ETH.

OUR HAPPY BABY IS BACK

ETHAN FINALLY IS GETTING OVER HIS "COMMON COLD" HE HAS HAD FOR THE LAST WEEK. HE HAS BEEN SNOTTY, COUGHING, FEVER, HAD A SINUS INFECTION AND PINK EYE IN BOTH EYES. HE WAS A MESS.  HE IS STARTING TO BE BACK TO HIMSELF AND WE ARE FINALLY GETTING SLEEP AT NIGHT AGAIN. ETHAN'S COUGH HAS ROBBED US FROM OUR SLEEP THE LAST WEEK AND IT HAS BEEN ROUGH WAKING UP TO THE ALARM CLOCK IN THE MORNING. WITH PWS YOUR BODY DOESN'T FIGHT COLDS WELL. IT IS ALSO VERY COMMON FOR A COUGH TO TURN INTO A SERIOUS CASE OF PNEUMONIA IN A MATTER OF HOURS. ALSO YOUR BODY OFTEN DOESN'T SHOW SIGNS OF ILLNESS THE WAY THEY SHOULD. WITH BOTH THEIR HIGH PAIN TOLERENCE AND THEIR SOMETIME ABSENT FEVER, IT IS HARD TO GAUGE HOW SICK ETHAN REALLY IS . THIS IS THE FIRST TIME ETHAN HAS BEEN SICK ENOUGH THAT I PANICED A LITTLE. I READ ALL THE TIME ABOUT PWS KIDS ENDING UP IN THE ER WITH PNEUMONIA FROM THE COMMON COLD AND HOW DANGEROUS IT CAN BE FOR THEM. SO I WAS THE OVER PROTECTIVE MOM TAKING HIM TO THE DOCTOR GETTING HIM ON MEDS AND REFUSING TO LEAVE THE HOUSE UNTIL HE WAS BETTER.

FINALLY WE HAVE OUR LITTLE HAPPY BOY BACK. HE IS SUCH A CHARACTER. IN THE LAST FEW WEEKS ETHAN HAS PICKED UP SUCH A PERSONALITY, HE ACTS A LOT LIKE HIS DADDY. HE IS HIS BIGGEST FAN AND THINKS HE IS PRETTY FUNNY. HE SCREAMS AT THE TOP OF HIS LUNGS TO GET YOUR ATTENTION. HE  HAS ALSO LEARNED HOW TO WINK AT YOU, AND IT IS THE CUTEST THING EVER. RECENTLY HE HAS REALLY BEEN USING HIS SIGNS MORE, HE SIGNS MORE, EAT,  AND PLEASE, HE ALSO IS WAVING, HIGH FIVES, CLAPS, GIVES KISSES, GIVES HUGS, AND DANCES. I FEEL LIKE IN THE LAST MONTH OR SO HE IS REALLY CATCHING ON ALOT QUICKER. HE IS ALSO BECOMING MORE SOCIAL WITH PEOPLE. IT IS SO FUN TO SEE HIM TURN INTO A LITTLE BOY INSTEAD OF A BABY. IT IS AWESOME TO WATCH HIM HAVE EMOTION FOR THINGS NOW AND TO REALLY SEEM  INTERSTED IN NEW THINGS. ON THE STRENTGH SIDE HE IS GETTING STRONGER AND STRONGER. ALTHOUGH HIS STRENGTH IS  ETHAN'S BIGGEST STRUGGLE SO FAR HE HAS BEEN MAKING PROGRESS. 

WE ARE STILL WORKING ON CRAWLING INTHEARPY, HE IS SO CLOSE, BUT JUST NOT THERE YET. HIS ARMS ARE THERE, NOW WE JUST NEED TO GET HIS LEGS THERE. HE IS DEFINITLY WANTING TO MOVE A LOT MORE THAN EVER AND IS A LOT MORE ACTIVE, HIS MUSCLES JUST NEED TO CATCH UP.

ON THE OTHER SIDE OF HIM GROWING UP THE FITS/ TEMPER TANTRUMS HAVE STARTED. MAN THIS KID WILL LET YOU KNOW WHEN HE IS UNHAPPY. HE HAS BEEN SOOOOOOOOO GOOD FOR SO LONG HE KIND OF SPOILED US, AND THEN BAM ONE DAY HE THREW A FIT AND NEVER LOOKED BACK. HE WILL TURN RED AND YELL THEN THE TEARS START, IT IS SO HARD TO SIT AND WATCH HIM CRY AS HE IS THE SADDEST CRYER EVER.

IT IS HARD AS A FIRST TIME PARENT TO SET THE BOUNDARIES. IT IS HARD TO NOT JUST GIVE THEM WHATEVER THEY WANT BECAUSE THEY ARE JUST BABIES. IT IS HARD TO TELL THEM NO AND LET THEM CRY WHEN YOU AREN'T EVEN SURE IF THEY UNDERSTAND. RIGHT NOW I AM HAVING A REALLY HARD TIME SAYING NO TO ETH, AND I THINK THAT IS BECAUSE SOMETIMES I UNDERSTAND WHY HE IS CRYING. HE WANTS TO BE ABLE TO MOVE AND HE CAN'T BECAUSE OF HIS LOW-TONE. I THINK HE BECOMES SO FRUSTRATED WITH IT AND THAT IS WHERE SOME OF HIS FITS STEM FROM.  ALSO I SOMETIMES THINK IT IS OKAY TO SPOIL HIM. HE WAS DEALT A ROUGH HAND AND HAS BEEN THROUGH MORE THAN ANYONE SHOULD HAVE TO IN A LIFE TIME, AND I FEEL LIKE WHATS IT GOING TO  HURT IF HE GET A TOY HE WANTS OR IF HE DOESN'T WANT TO GO NAP IN HIS CRIB? THEN REALITY KICKS IN AND I REALIZE I HAVE TO BE FIRM WITH HIM AND I HAVE TO LEARN HOW NOW. WHEN HE IS OLDER AND HITTING HIS FOOD ISSUE STAGE JUST BECAUSE HE CRIES AND TELLS ME OVER AND OVER AGAIN THAT HE IS HUNGRY I CAN'T CAVE. I HAVE TO BE STRONG AND I HAVE TO DO WHAT IS BEST FOR HIM.

SO MY THERAPY FOR THE NEXT FEW WEEKS IS GOING TO BE TO NOT LET MYSELF CAVE SO MUCH, TO TEACH MY CHILD CRYING DOESN'T GET HIM WHATEVER HE WANTS, BUT TO STILL MAKE SURE HE KNOWS HOW MUCH I LOVE HIM.

few pics for fun- the last one is just because his hair is so awesomely out of control

SAD DAY

 LAST NIGHT THE PWS COMMUNITY LOST A LIFE. A GIRL NAMED LIZZY PASSED AWAY IN HER SLEEP AND SHE WAS ONLY 24 YEARS OLD. PRAYERS GO OUT TO HER FAMILY.

NEWS LIKE THIS HITS A LITTLE TOO CLOSE TO HOME. IT IS SOMETHING THAT COULD HAPPEN TO ANY OF US, BUT MORE LIKELY WHEN YOU ARE CARING FOR A CHILD WITH SPECIAL NEEDS OR PWS.  IT MAKES ME SICK TO THINK ABOUT HOW SCARED I AM FOR OUR FUTURE AND MORE SO HOW SCARED I AM FOR ETHAN AFTER KEVIN AND I AREN'T HERE ANY LONGER. WHO WILL LOVE HIM ENOUGH TO WATCH HIM EVERY SECOND OF THE DAY AND PUT IN ALL THE EXTRA EFFORTS HE WILL NEED?... I KNOW PEOPLE PROBABLY THINK I AM CRAZY THAT I ALREADY THINK ABOUT THIS STUFF AND ETHAN IS ONLY 15 MONTHS OLD. BUT I HAVE THOUGHT ABOUT THIS EVERYDAY SINCE THE DAY HE WAS BORN, AND WHEN A SITUATION HAPPENS LIKE IT DID LAST NIGHT IT IS ALL I CAN THINK ABOUT.

ON A MUCH HAPPIER NOTE... ETHAN HAS HAD A GOOD FEW WEEKS. WE HAD AN APPT YETERDAY WITH HIS DOCTOR AND HE SEEMED VERY PLEASED WITH WHERE ETHAN WAS AT. HE IS FINALLY GAINING WEIGHT 18.1 LBS ( 3RD %) GETTING TALLER 29 INCHES ( 3RD %) AND HIS HEAD IS GROWNING AT A STEADY RATE 46 CM ( 50%). HA HA HIS HEAD LOOKS MUCH BIGGER THAN THE 50TH PERCNTILE WITH HIS 3 PERECENT BODY.... BUT MAN IS IT CUTE.

ETHAN ALSO IS SAYING MOMMA A LOT MORE, MAKING MORE NOISES, AND SIGNING BETTER. HE SIGNS PLEASE FOR EVERYTHING AND IS NOW REALLY WORKING ON "MORE" AND "EAT". I FEEL HE ALSO UNDERSTANDS SO MUCH BETTER. HE HIGH FIVES, CLAPS, WAVES, BLOWS HIS NOSE, AND GIVES KISSES.....

HE IS STILL WORKING HARD IN THERAPY TO BECOME MORE MOBILE. HE HAD HIS FIRST THERAPY SESSION WITH HIS NEW THERAPIST TODAY, AND SHE SEEMED TO REALLY CARE HOW HE WAS DOING.

I FEEL WE HAVE SEEN BIG CHANGES IN THE LAST 2 WEEKS, IT GIVES ME HOPE AGAIN!

HERE IS A PIC IN HIS HALLOWEEN COSTUME

JUST BECAUSE

IT HAS BEEN A WHILE SO I THOUGHT IT WOULD BE A GOOD TIME TO WRITE. NOT MUCH HAS BEEN GOING ON IN THE BELLACOSA HOUSEHOLD THAT IS TOO EXCITING.

LETS SEE ETHAN IS STILL TRUCKING AWAY IN THERAPY. HE SEEMS TO BE GETTING CLOSER AND CLOSER TO CRAWLING, STILL JUST NOT STRONG ENOUGH. ETHAN HAS ALSO RECENTLY DISCOVERED A NEW LOVE FOR HIS BABY WALKER, WHICH HE TENDS TO ONLY GO BACKWARDS IN. WE FIGURE BACKWARDS IS OKAY AS LONG AS HE IS USING HIS LEGS AND MAKING THEM STRONGER.

ETHAN IS ALSO IN THE PROCESS OF GETTING FOUR NEW TEETH. THE POOR KIDS GUMS ARE SO SWOLLEN AND TENDER. HE HASN'T BEEN A HAPPY CAMPER LATELY AND I UNDERSTAND WHY FOR SOME REASON THESE 4 HAVE BEEN MUCH HARDER ON HIM THEN ANY OF HIS OTHER TEETH. HOPEFULLY ONCE THESE TEETH POP THROUGH THEY WILL MAKE HIM A BETTER CHEWER.

HALLOWEEN IS RIGHT AROUND THE CORNER AND WE ARE STILL TRYING TO FIGURE OUT WHAT ETHAN SHOULD DRESS UP AS. HE IS IN A AWKWARD SIZE OF CLOTHES SO NOT SURE HOW MANY COSTUMES WILL FIT HIM. I FIGURE THIS YEAR WE WILL DRESS HIM UP TAKE HIM TO THE GRANDPARENTS AND AUNTS AND UNCLES AND THEN GO HOME AND GIVE OUT CANDY. WE ARE ALSO GOING TO CARVE PUMPKINS SOMETIME NEXT WEEK. I FIGURE GO ALL OUT THIS YEAR, AND GIVE ETHAN A GREAT HALLOWEEN. OF COURSE HE WILL NOT BE EATING ANY CANDY, BUT FIGURE LET HIM GO EXPERIENCE THE HALLOWEEN TRADITION THIS YEAR SINCE THIS YEAR MAY BE THE LAST THAT HALLOWEEN ISN'T A TOTAL DISASTER AT OUR HOUSE.

WHO KNOW MAYBE IT WON'T HAPPEN FOR A FEW YEARS, BUT IN THE PWS COMMUNITY HALLOWEEN IS ONE OF THE MOST HATED DAYS OF THE YEAR. ONCE OCTOBER COMES YOU START TO HEAR ALL THE OTHER PARENTS PANIC ABOUT HALLOWEEN. IT MAKES ME SAD THAT ARE KIDS DON'T GET TO EXPERIENCE THIS HOLIDAY FOR KIDS, LIKE EVERY OTHER KID.

WHEN KEVIN AND I WERE OUT BUYING CANDY WE STARTED THINKING ABOUT WHAT WE COULD GIVE OUT NEXT YEAR INSTEAD OF CANDY, AND WE JOKED HOW THE WORD WAS GOING TO GET OUT AN NO KIDS WOULD COME TO OUR DOOR. MAYBE THAT IS WHAT WILL HAPPEN BUT ONE THING IS FOR SURE NO MATTER WHAT WE WILL FIGURE OUT SOME WAY TO MAKE ETHAN ENJOY HALLOWEEN TOO. WE WILL THINK OF SOME WAY TO MAKE HIM NOT FEEL EXCLUDE FROM THE FUN.

A HOLIDAY BASED AROUND A LARGE AMOUNT OF CANDY GIVEN OUT TO EACH KID SEEMS LIKE A PWS NIGHTMARE...... BUT WE WILL START A NEW TRADITION  AND A NEW MEANING TO HALLOWEEN IN OUR HOUSE. 

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.