EASTER WEEKEND

ETHAN'S FIRST EASTER WAS NICE.  WE SPENT OUR DAY WITH BOTH FAMILIES.

WE WOKE UP ABOUT 3:45 BECAUSE ETHAN WAS NOT A HAPPY CAMPER, THE ONLY THING THAT MADE HIM HAPPY WAS LETTING HIM OPEN HIS EASTER BASKET EARLY. HE LOVED HIS NEW TOYS AND PLAYED WITH THEM ALL MORNING UNTIL WE WENT TO NANA'S HOUSE.

MY MOM MADE BRUNCH FOR ALL OF US AND IT WAS SO DEILCIOUS. THERE WAS MORE FOOD THEN WE KNEW WHAT TO DO WITH.THEN OF COURSE THE EASTER BUNNY CAME TO NANA'S HOUSE FOR ETHAN, RYANNE, JACK, AND NEW BABY CARROLL. WE SAT AROUND AND HAD A NICE RELAXING DAY AS A FAMILY. WE ATE A LOT AND THE KIDS PLAYED WITH THEIR NEW TOYS. THEN WE WERE OFF TO KEVIN'S SIDE OF THE FAMILY.

KEVIN'S GRANDMA HAD EASTER DINNER AT HER HOUSE THIS YEAR. OF COURSE THE EASTER BUNNY HAD STOPPED AT HER HOUSE (GREAT GRANDMA) AND JANICE'S HOUSE (GRANDMA) FOR ETHAN AS WELL. HE GOT SO MANY NEW COOL THINGS, I AM AFRAID KEVIN AND I PLAYED WITH THEM MORE THAN HE DID. AFTER BASKETS IT WAS TIME FOR THE EASTER EGG HUNT. THEY DO THE KIDS FIRST AND ONCE THEY ARE DONE THEY DO AN ADULT HUNT, AND MAN DOES IT COMPETITIVE. KEVIN AND I MADE OUT PRETTY WELL, FOUND MOST OF THE EGGS THAT HAD MONEY IN THEM AND LATER PUT THAT IN ETHAN'S PIGGY BANK. THEN THEY HAD A TON OF FOOD AS WELL, IT LOOKED LIKE THEY HAD COOKED FOR A ARMY. I WAS SO FULL, I HAD JUST SPENT THE ENTIRE DAY EATING.

I ENJOYED EASTER WITH BOTH FAMILIES, BUT I HAVE TO ADMIT THE WHOLE DAY I WAS LOOKING AROUND US AND THINKING HOW IN THE WORLD WILL WE BE ABLE TO DO THIS WITH ETHAN WHEN HE IS OLDER? HOW WILL WE BE ABLE TO GO TO A FAMILY EVENT WITH ALL THIS FOOD, SODA, AND CANDY? HOW WILL I EXPLAIN TO HIM THAT ALL THE OTHER KIDS GET CANDY IN THEIR EASTER EGG BASKETS, BUT HE CAN'T HAVE ANY? HOW DO I TELL HIM WITH SO MUCH FOOD LEFT OVER THAT HE CAN'T HAVE ANYMORE?

WHO KNOWS WHEN ETHAN WILL HAVE FOOD CRAVINGS (IF EVER) , BUT ONE THING I DO KNOW IS WHEN THAT DAY COMES I WANT TO BE PREPARED. I WANT TO HAVE OUR OWN TRADITIONS ON EASTER AND HALLOWEEN THAT DON'T INVOLVE CANDY, I WANT TO BE ABLE TO FIGURE HOW TO STILL CELEBRATE HOLIDAYS WITH FAMILY WITH OUT HAVING TO WORRY ABOUT THE FOOD.

WE ARE LUCKY TO HAVE TWO FAMILIES THAT LOVE ETHAN TO DEATH, AND UNDERSTAND THAT THIS STUFF IS LIFE THREATENING TO ETH AND IT ISN'T JUST LIKE YOU CAN GIVE HIM TREATS LIKE GRANDPARENTS OFTEN DO. WE ARE LUCKY THAT NO MATTER WHAT CHANGES WE HAVE TO MAKE TO ENJOY HOLIDAYS WITH OUR FAMILIES THAT OUR FAMILIES ARE WILLING TO MAKE THOSE CHANGES WITH US. WE UNDERSTAND THAT ETHAN'S "REQUIRMENTS" ARE OFTEN A LOT TO ASK OF PEOPLE, BUT WHEN IT BECOMES SOMETHING THAT IS  THREATENING TO THE LIFE OF OUR CHILD WE WILL DO WHAT EVER IT TAKES.


HERE ARE SOME PICS FROM EASTER WEEKEND......

SORRY NOT SURE WHY SOME ARE SIDEWAYS

SPICA CAST

THURSDAY WE GOT ETHAN'S SPICA CAST ON AFTER THEY PERFORMED A CLOSED REDUCTION ON HIS HIP. WHEN I WENT BACK TO THE RECOVERY ROOM I WAS THROWN OFF BY HOW WIDE HIS LEGS ARE SPREAD. I THOUGHT I HAD PREPARED MYSELF EVERY WAY POSSIBLE, I LOOKED AT ALL THE PICTURES ON THE INTERNET SOME WORSE THAN ETHAN'S AND SOME BETTER I GUESS YOU JUST CAN'T PREPARE WHEN IT IS YOUR OWN KID. TO SEE MY LITTLE MAN SO UPSET/SCARED AND LOOKING SO UNCOMFORTABLE WAS THE WORST FEELING IN THE WORLD. ONCE AGAIN THIS BECAME ONE OF THOSE TIMES I WISHED I COULD TRADE PLACES WITH HIM.

ONCE ETHAN GOT OVER THE INITAL SHOCK OF NOT BEING ABLE TO MOVE HIS LEGS, HE DID GREAT. HE ADJUSTED SO WELL, AND WAS JUST SO HAPPY TO SEE KEVIN AND I WERE THERE WITH HIM. EVERY TIME THIS KID GOES THROUGH A SURGERY OR SOMETHING PAINFUL OR SCARY IT  AMAZES ME HOW STRONG HE IS, IT AMAZES ME HOW EASILY HE CAN FORGIVE US FOR PUTTING HIM THROUGH ALL THIS, AND AMAZES ME HOW HE FOR SOME REASON IS THE ONE TRYING TO MAKE US FEEL BETTER INSTEAD OF US BEING STRONG FOR HIM. KEVIN AND I BOTH FEEL EXTREMLY LUCKY TO HAVE SUCH A STRONG HAPPY KID. THE NUSRSES TOLD US OVER AND OVER AGAIN HOW THEY COULDN'T BELEIVE HOW WELL ETHAN WAS HANDLING THE CAST, AND HOW HIS HAPPINESS MADE THEIR DAYS BETTER.

WHEN WE GOT RELEASED FROM THE HOSPITAL FRIDAY WE WERE SO EXCITED TO GO HOME, BUT YET A LITTLE NERVOUS. I STARTED TO PANIC ABOUT HOW THE HELL I WAS GOING TO BE ABLE TO DO THIS FOR 16 WEEKS. WHEN  ALL THE IVS AND WIRES CAME OFF I WAS FINALLY ABLE TO HOLD AND COMFORT MY BABY. IT WAS AWKWARD AT FIRST TO HOLD HIM NOT ONLY WERE HIS LEGS SPREAD FAR APART BUT HE WEIGHED MORE. WE GOT HIM FITTED TO HIS NEW (RENTED) CAR SEAT AND TOOK ETHAN HOME.

WHEN WE GOT HOME WE TRIED OUT HIS NEW BEAN BAG AND HIS CHAIR WE BOUGHT HIM, WE WERE TRYING TO JUST FIGURE WHAT WOULD WORK AND WHAT WOULDN'T. WHERE WILL ETHAN BE THE MOST COMFORTABLE? WHERE CAN WE PUT HIM WHERE THE BLOOD ISN'T RUSHING DOWN HIS LEGS OR HIS FEET AREN'T FALLING A SLEEP? WE STARTED TO FIGURE OUT EXATLY HOW THE NEXT FOUR MONTHS WERE GOING TO GO..... AND TO BE HONEST IT IS GOING TO BE ROUGH.

IT HAS BEEN FIVE DAYS NOW ( AROUND 115 MORE TO GO BUT WHOS COUNTING?) AND WE ARE STARTING TO ADJUST AND STARTING TO FIGURE OUT WHAT WORKS FOR US. THE PROBLEM WE ARE HAVING NOW IS ETHAN GETS SO BORED. NO MATTER WHERE HE IS SITTING OR HOW MANY TOYS ARE IN FRONT OF HIM WHEN HE CAN'T MOVE MUCH HE GETS EXTREMLY BORED. I CAN'T BLAME HIM. WITH ALL HIS THERAPY ETHAN WAS JUST FIGURING OUT HOW TO ROLL OVER AND MOVE HIS LEGS AND SCOOT AROUND HIS THERAPY MAT, HE WORKED SO HARD TO GET THERE AND NOW SUDDENLY THAT IS ALL TAKEN AWAY.  SO FAR THIS HAS BEEN THE HARDEST PART FOR ME IT JUST LOOKS SO FRUSTRATING, AND I AM NOT ABLE TO EXPLAIN TO HIM THAT IT IS FOR THE BEST.

SOMETIMES I THINK " THANK GOD THIS IS HAPPENING NOW AND WE CAUGHT IT EARLY"  BUT OTHER TIMES I THINK  HOW MUCH EASIER IT WOULD HAVE BEEN IF HE WAS OLDER AND WE WERE ABLE TO EXPLAIN TO HIM WHY THIS IS HAPPENING, OR HE WAS ABLE TO TELL US HE WAS IN PAIN OR ITCHED OR HOT, OR EVEN JUST FRUSTRATED. ETHAN WAS CRYING LAST NIGHT (A LOT FOR HIM)  AND I FEEL SO BAD BECAUSE I AM NOT SURE EXACTLY WHAT IS BOTHERING HIM, I  WAS WARNED HE WOULD GET MUSCLE SPASMS SO MAYBE HE IS IN PAIN, BUT IF HE IS JUST BORED OR MAYBE ITCHING I DON'T WANT TO MEDICATE HIM, AT THE SAME TIME IF HE IS IN PAIN I WANT TO MAKE SURE I AM GIVING HIM HIS PAIN MEDS. HOPEFULLY IT WILL GET EASIER THE MORE ALL OF US GET USE TO IT.

ANOTHER THING THAT IS EXTERMLY IRRATATING IS OTHER PEOPLE. I CAN'T STAND THE STARES PEOPLE GIVE US " NO PEOPLE WE DO NOT BEAT OUR KID". I ALSO CAN'T STAND WHEN A COMPLETE STRANGER COMES UP AND ASKS WHAT HAPPENED, I DO NOT FEEL LIKE I NEED TO EXPLAIN TO PEOPLE I DON'T EVEN  KNOW WHAT IS GOING ON WITH MY CHILD, MAYBE IT IS JUST ME BUT I FEEL IT IS RUDE TO EVEN ASK. THE WORST IS WHEN PEOPLE COME TO SEE HIM AND THEY LOOK AT US AND SAY " IT'S NOT THAT BAD" REALLY IT'S NOT? HOW MUCH WORST CAN IT GET , WOULD YOU LIKE HIS ENTIRE BODY CASTED? IT JUST DRIVES ME INSANE IT'S NOT THAT BAD BECAUSE IT IS NOT THEIR CHILD THAT HAS TO GO THROUGH THIS, AND I KNOW MOST PEOPLE SAY IT TO MAKE ME FEEL BETTER BUT IT DOESN'T AT ALL.

ONE THING THAT DOES MAKE ME FEEL BETTER IS HOW AMAZING MY HUSBAND IS. HE MAKES THE EXPERINCE SO MUCH EASIER FOR ME, WHEN I HAVE SUCH A GREAT PARTNER. WHEN HAVING A SPECIAL NEEDS KID THE DIVORCE RATE IS EXTREME, AND I SEE WHY. WITH A SPECIAL NEEDS KID YOU FOCUS ALL YOUR TIME AND ENERGY ON YOUR CHILD, APPTS., THERAPY, SPECIALIST, SURGERIES, A SPICA CAST HA HA, AND YOU DON'T TAKE THE TIME FOR YOUR SPOUSE. I CATCH MYSELF FALLING INTO THE PWS TRAP AND CONSUMING MY ENTIRE LIFE WITH ETHAN'S NEEDS. KEVIN GROUNDS ME AND MAKES ME REALIZE JUST HOW LUCKY I AM TO HAVE A MAN IN MY LIFE THAT WANTS EVERYTHING I WANT FOR ETHAN AS WELL. KEVIN IS SO PROUD OF ETHAN AND SOMETIMES HAS TO POINT OUT ALL THE ACCOMPLISHMENTS TO ME WHEN I AM OVERWHELMED AND WORRYING ABOUT WHAT IS NEXT. I GOT TO TELL YOU I DO NOT HAVE A CLUE HOW SINGLE PARENTS DO IT AND COULD NOT EVEN IMAGINE DOING THIS ALONE.

HERE ARE SOME PICS OF ETH IN HIS NEW CAST.....

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.

Example of cast

INSPIRATION OF BLOGGING

WHEN I FIRST TOLD MY HUSBAND I WAS WRITING A BLOG, HE ASKED " WHY WOULD YOU WRITE A BLOG WHO IS GOING TO READ IT?"

I TOLD HIM THAT WHEN ETHAN WAS FIRST DIAGNOSED I LOOKED FOR SUPPORT , FOR ANSWERS AND FOR SOMEONE ELSE WHO KNEW WHAT WE WERE GOING THROUGH . NOT ONLY DID I FIND AN AMAZING GROUP ON FACEBOOK  WITH HUNDREDS OF FAMILIES WHO HAVE BEEN IN OUR SHOES, I ALSO FOUND ALOT OF THE PARENTS BLOG ABOUT THE EXPERIENCE WITH RAISING A PWS CHILD.

AS I STARTED READING THESE BLOGS IT MADE ME REALIZE THAT WE AREN'T ALONE AND THAT THERE ARE PEOPLE WE CAN TALK TO AND ASK ADVICE. ALSO WHEN YOU READ SOMEONES PERSONAL STORY YOU FIND OUT THAT YOU AREN'T THE ONLY ONE THAT HAS A BAD DAY AND YOUR NOT THE ONLY ONE THAT GETS BROUGHT DOWN BY THIS SYNDROME. IT'S OKAY TO GET FRUSTRATED, LOSE PATIENCE AND BE SAD SOMETIMES, AND IT'S OKAY TO GET SICK OF BEING AT THE DOCTORS AND MEETING THERAPISTS AND SPECAILIST.

BLOGS HAVE ALSO GIVEN ME HOPE FOR THE FUTURE. IT IS NICE TO SEE OTHER PEOPLE WHO SHARE THE SAME JOY THAT WE DO WHEN THEIR CHILD REACHES A MILESTONE, A MILESTONE WHICH WOULD REGULARLY NOT BE SUCH A BIG DEAL BUT TO US IS HUGE. IT IS AMAZING TO SEE PICTURES AND VIDEOS  AND WATCH THESE KIDS GROW AND SUCESSED. IT IS FUNNY HOW MUCH JOY I GET FOR THESE CHILDREN THAT I HAVE NEVER EVEN MET BUT SOME HOW FEEL I HAVE A CONNECTION TOO THROUGH ETHAN.

BLOGS HAVE ALSO BEEN A GREAT PLACE TO FIND ADVICE AND FIND THINGS THAT HAVE WORKED FOR OTHER PARENTS. I HAVE GONE TO THE DOCTOR WITH MANY OF SUGGESTIONS THAT I WOULDN'T HAVE EVEN KNOWN ABOUT IF IT WEREN'T FOR READING OTHER PEOPLE'S EXPERIENCES. I WOULD HAVE NEVER KNOW ABOUT THE INFAMOUS DR. MILLER IF IT WEREN'T FOR CONNECTING WITH OTHER PARENTS.

SO I GUESS MY  ANSWER TO MY HUSBAND WOULD BE " I AM WRITING A BLOG IN HOPES THAT WHEN A NEWLY DIAGNOSED MOM WHO FEELS AS LOST AS I DID WILL READ IT, AND FIND THAT IT IS OKAY TO FEEL HOW SHE FEELS, AND WILL SEE THERE IS HOPE FOR THE FUTRE, AND THERE  ARE MANY PARENTS WHO HAVE BEEN IN HER SHOES.

JUST BECAUSE HE IS CUTE !!!

WE GOT A TOOTH!!!!

THIS WEEKEND ETHAN WAS NOT ACTING LIKE HIMSELF, CRANKY, CRYING WHIINING MORE, AND HAD AN UPSET STOMACH..... THEN I NOTICE HE WAS NON STOP CHEWING ON EVERYTHING..... AND SURE ENOUGH WAS GETTING A TOOTH. JUST YESTERDAY MY LITTLE MANS FIRST TOOTH POPPED THROUGH, I WAS EXCITED FOR HIM BECAUSE MAYBE HIS PAIN WOULD GO AWAY BUT KINDA SAD FOR ME ONLY BECAUSE I LOVE HIS TOOTHLESS LITTLE SMILE. TEETH MEANS MY BABY IS GETTING OLDER, AND I DON'T LIKE IT ONE BIT

older pic, but shows how cute his toothless smile is

CATCHING UP FOR THE LAST 8 MONTHS

SINCE I  AM A LITTLE BEHIND ON MY BLOG I THOUGHT I WOULD JUST GO THROUGH A FEW OF ETHAN'S ACCOMPLISHMENTS SINCE WE HAVE GOTTEN HIM HOME OR ELSE I COULD GO ON FOREVER IF I WENT DAY BY DAY. SO HERE WE GO

 SEPT 2010- OFF OXYGEN- ETHAN WAS ONLY ON OXYGEN FOR A MONTH AFTER WE GOT HOME. ANOTHER MACHINE I WAS NOT SAD TO SEE GO, THAT THING MADE IF VERY HARD TO TRAVEL WITH WHEN THE TANK WEIGHED FOUR TIMES AS MUCH AS ETHAN.

OCTOBER 2010- ETHAN CRIED THE FIRST TIME SINCE BEING BORN

JAN4, 2011 -FEEDING TUBE- ETHAN WAS SENT HOME ON A FEEDING TUBE BECAUSE OF LOW MUSCLE TONE HE WAS UNABLE TO EAT ON HIS OWN... JANUARY 4TH HIS FEEDING TUBE WAS REMOVED AFTER NOT USING IT FOR 3 MONTHS. AS OF SEPTEMBER 2010 ETHAN HADN'T USED HIS FEEDING TUBE. OCCUPATIONAL THERAPY, AND LONG FEEDING SESSIONS HAVE PAID OFF..... THE DAY I DIDN'T HAVE TO DO THE FEEDING TUBE ANYMORE WAS SO FAR ONE OF MY HAPPIEST.

JAN 30 2011- STARTED GH. AFTER MANY MONTHS FIGHTING WITH THE INSURANCE COMPANIES ETHAN FINALLY GOT APPROVED TO START HIS GROWTH HORMONE SHOTS.

FEB 2011- ETHAN'S EEG CAME BACK NORMAL. NO MORE SEIZURES, AND NO MORE KEPPRA. IT IS NICE TO ELIMINATE A MEDICINE THAT IS TWICE DAILY SINCE HE HAS TO MANY.

FEB 2011- WORKING HARD IN OCCUPATIONAL/PHYSICAL THERAPY ETH WAS ABLE TO LIFT HIS HEAD ON HIS OWN.....THE BEAUTY OF PRADER WILLI IS EVERY MILESTONE MEANS SO MUCH MORE, AND ISN'T JUST OVERLOOKED. THAT WAS A NIGHT OF CELEBRATION FOR US.... MAN HE MAKES ME SO PROUD!

FEB 2011- ETHAN ALSO ROLLED OVER ALL BY HIMSELF.IT IS SO HARD TO THINK BACK TO THE FIRST MONTH WHEN HE WOULDN'T MOVE AT ALL, AND NOW HE IS ROLLING OVER IT IS JUST AMAZING.

MARCH 2011- ONE OF OUR SCARIEST DAYS ....ETHAN WENT THROUGH TWO SURGERIES: ONE TO CLOSE UP HIS STOMACH FROM HIS G- TUBE SO IT WOULD STOP LEAKING, AND ALSO A AN ORCHIOPEXY ( BRINGING DOWN AN UNDECENDED TESTICLE)  HE IS SUCH A STRONG, TOUGH BOY. HE IS A TROOPER.....

MARCH 2011- ETHAN CAN PROP SIT, AND MAN DOES HE LOOK CUTE DOING IT. THIS IS DEFINTLY NOT HIS FAVORITE THING TO WORK ON, BUT SLOWY HE IS GETTING IT.

NOW I WILL CATCH YOU UP ON PICTURES- SORRY NOT IN TIMELINE ORDER

                                           IN THE HOSPITAL SPENDING TIME WITH DADDY

                                          AFTER HIS G-TUBE SURGERY

                                            FINALLY HOME, RELAXING WITH DAD

                                             

   SLEEP STUDY JANUARY

                                           

                                                                EEG FEB 2011

                                                         FIRST TIME HOLDING HIS HEAD UP

                                                      TEETHING

                                         FIRST ST PATTY'S DAY TWO DAYS AFTER SURGERY

                                          DOING HIS THERAPY

                                           AT THE HOSPITAL BEFORE SURGEY MARCH 9, 2011

                                          LAUGHING AT DADDY

                                            FIRST CHRISTMAS

     FIRST HALLOWEEN                                         PROP SITTING

THE START OF OUR NEW LIFE

AFTER ETHAN WAS HOME WE STARTED GETTING SETTLED INTO OUR NEW LIFE, FIGURING OUT HOW TO WORK AROUND HIS OXYGEN AND FEEDING TUBES WITH OUT GETTING TANGLED OR THE DOGS TRIPPING OVER THEM, HOW TO SCHEDULE THE INSANE AMOUNT OF DR. APPTS. WE HAD ALONG WITH THE IN HOME NURSE AND THE IN HOME OCCUPATIONAL THERAPY SESSIONS.

WE STARTED TO GET INTO ROUTINE AND TO FIND WHAT WAS EASIEST FOR US AND WHAT WAS BEST FOR ETHAN. ETHAN BROUGHT SO MUCH JOY TO OUR HOUSE WE FELT COMPLETE AND JUST SO LUCKY TO HAVE HIM HOME.

FOR THOSE THAT AREN'T FIMILAR PWS IS A GENTIC SYNDROME THAT COMES WITH A LOT OF CHALLENGES ALONG THE WAY, HERE ARE A FEW:

* LOW MUSCLE TONE
* FAILURE TO THRIEVE
* TROUBLE SUCKING/EATING DURING INFANCY
*DELAYS IN MOTOR SKILLS, WALKING, TALKING, LEARNING.
* LOW TO MODERATE MENTAL RETARDATION
* ONCE OUT OF INFANT/TODDLER STAGE NOT HAVING THE ABILITY TO FEEL FULL WHICH   CAN LEAD TO OVER EATING, AND SOME CASES  OBESITY OR DEATH.

MY FIRST BLOG- INTRODUCTION

I HAVE BEEN WANTING TO WRITE A BLOG SINCE ETHAN WAS BORN, BUT JUST HAVEN'T BEEN ABLE TO GET AROUND TO IT.  NOW ETHAN IS 8 1/2 MONTHS OLD AND I HAVE A LOT TO CATCH UP ON.

ON JULY 16TH 2010 I WAS SO EXCITED I WAS GOING TO BE MEETING MY LITTLE MAN I HAVE WAITED SO LONG TO MEET. WE HAD A PLANNED C-SECTION SCHEDLUED FIRST THING IN THE MORNING, AND BOTH OF US WERE OVERWHELMED WITH EXCITMENT. THE C-SECTION WENT WELL AND LITTLE ETHAN MAC JOINED THIS WORLD WITH A SCREAM ( LITTLE DID I KNOW AT THE TIME THAT WOULD BE THE LAST TIME I HEARD HIM CRY UNTIL HE WAS 3 MONTHS OLD) HE CAME OUT WITH A FULL HEAD OF HAIR, AND THE CUTEST LITTLE FACE. KEVIN WENT WITH ETHAN WHILE THEY FINISHED SEWING ME UP. KEVIN SOON RETURNED TO THE RECOVERY ROOM TO TELL ME ETHAN WAS HAVING A HARD TIME BREATHING AND THEY NEEDED TO PUT HIM ON OXYGEN. IN MY HEAD I THOUGH THAT HAPPENED A LOT AFTER BIRTH AND WASN'T TO WORRIED ABOUT IT.

KEVIN KEPT GOING BACK AND FOURTH FROM ME TO ETHAN WHILE I WAS IN RECOVERY. ALL I COULD THINK OF IS WANTING TO SEE AND HOLD MY BABY BOY. IT WASN'T UNTIL KEVIN WALKED IN RECOVERY THE LAST TIME, AND I SAW THAT LOOK ON HIS FACE THAT I KNEW SOMETHING WASN'T QUITE RIGHT. KEVIN EXPLAINED TO ME THAT THEY WERE WORRIED ABOUT HIS MOVEMENT OR LACK THERE OF, AND THAT THEY WANTED TO DO SOME TESTING. NOW MORE THEN EVER I JUST WANTED TO GO SEE MY BABY. I FINALLY GOT TO GO TO THE NURSERY AND SEE HIM, WHEN I HELD HIM HE WAS LIFELESS, HAVING A HARD TIME BREATHING AND WOULDN'T OPEN HIS EYES. THEY TOOK ME BACK TO MY ROOM AND ONCE AGAIN I HAD TO JUST LAY THERE AND WAIT UNTIL KEVIN WOULD COME BACK AND TELL ME WHAT WAS GOING ON. AT THIS POINT I WAS STILL HOLDING ON TO HOPE THAT IT WAS GOING TO BE SOMETHING SIMPLE AND THEY WERE GOING TO BE ABLE TO "FIX" HIM.

WHILE THEY WERE DOING TESTING AND MONITORING HIM THEY WOULD ALLOW KEVIN TO WHEEL ME DOWN TO SEE HIM EVERY ONCE IN A WHILE. WHILE I WAS SITTING THERE IN THE NURSERY LOOKING AT ETHAN I STARTED NOTICING ALL THE OTHER BABIES IN THERE. THEY ALL HAD THEIR EYES OPEN MOVING THEIR ARMS AND LEGS SO FULL OF LIFE. I LOOK DOWN AT ETHAN AND SAW NOTHING NO MOVEMNET HE LOOKED LIKE A LITTLE RAG-DOLL AND THAT IS WHEN I KNEW THIS IS SERIOUS.

LATER THAT DAY THE NURSES CAME IN AND TOLD US THEY WERE GOING TO FLIGHT FOR LIFE HIM TO CHILDREN'S HOSPITAL. MY HEART BROKE. NOT ONLY WAS MY SON SICK ENOUGH TO HAVE TO GET TRANSPORTED BUT I KNEW I WOULDN'T BE ABLE TO GO WITH HIM.  16 HOURS AFTER HE WAS BORN  FLIGHT FOR LIFE CAME AND PICKED ETHAN UP AT ABOUT  MIDNIGHT, KEVIN FOLLOWED THEM DOWN THERE AND SPENDT THE NIGHT WITH HIM WHILE I WAS STUCK IN RECOVERY. STILL NO ANSWERS. SOME HOW THE BEST DAY OF OUR LIVES TURNED INTO THE WORSE DAY OF OURLIVES IN JUST HOURS.

THE NEXT DAY I FOUGHT TO BE DISCHARGED AS EARLY AS POSSIBLE AND RUSHED TO CHILDREN'S HOSPITAL, WHEN I GOT THERE THEY WERE DOING A EEG ON HIM. I WASN'T EVEN ABLE TO HOLD HIM. I COULDN'T EVEN RECOGNIZE HIM UNDER ALL THE WIRES. I KEPT THINKING TO MY SELF THIS CAN'T BE HAPPENING.

WE SPENT THE NEXT 3 1/2 WEEKS AT CHILDREN'S HOSPITAL MEETING WITH ALL DIFFERENT TYPES OF SPECIALIST, DOING EVERY TEST POSSIBLE ON OUR POOR BABY, AND GOING THROUGH ALL THE POSSIBILTIES IN OUR HEADS. IT WAS AN EMOTIONAL ROLLERCOASTER. 

AT ABOUT ONE WEEK IN THEY DECIDED TO TEST HIM FOR PRADER WILLI SYNDROME, AMONG ABOUT 15 OTHER GENETIC/ METOBOLIC TESTS. WE WERE SO EAGER TO HAVE AN ANSWER, TO FIND OUT WHAT WAS WRONG WITH OUR SON. WE SPENT MANY OF NIGHTS IN THE HOSPITAL LOOKING UP PRADER WILLI SYNDROME TO SEE WHAT COULD BECOME OUR LIVES. IT WAS SCARY, AND HEARTBREAKING, AND VERY HARD TO PREPARE FOR. ABOUT A WEEK LATER THE DOCTORS CAME  TO US WITH ETHAN'S DIAGNOSIS HE DID IN FACT HAVE PRADER WILLI. IT WAS REALLY HARD TO HEAR ESPECIALLY WHEN JUST THE DAY BEFORE THEY HAD TOLD US HIS TEST FOR PRADER WILLI HAD COME BACK NEGATIVE. WE FOUND OUT LATER THE TEST THE DAY BEFORE WAS ONLY 75% ACCURATE.

SO NOW THAT WE HAVE THE DIAGNOSIS WE WEREN'T SURE WHAT WAS NEXT. WE HAD GENTICS, NEUROLOGY, EDOCRONOLGY, SOCIAL WORKERS, FINACIAL AID, SUPPORT GROUPS, EARLY INTERVENTIONS, AND MANY MORE GROUPS OF PEOPLE OVERLOADING US WITH INFORMATION AND SUPPORT.  IT WAS DIFFICULT TO TAKE IT ALL IN, AND TO STILL BE STRONG FOR YOUR BABY. KEVIN AND I SAT AT CHILDREN'S AND RESEARCHED EVERYTHING THERE WAS TO KNOW ABOUT PRADER WILLI, BUT WE STILL FELT LOST. AT THAT MOMENT I FELT LIKE DREAMS WERE LOST, WE WOULDN'T BE ABLE TO SEE ETHAN PLAY SPORTS, OR GO TO PROM, OR GRADUATE HIGH SCHOOL, HE WOULD NEVER GET MARRIED OR HAVE KIDS. ( I THINK DIFFERENTLY NOW). MY BIGGEST WORRY AND STILL SOMETHING THAT KEEPS ME UP AT NIGHT IS HOW WILL OTHERS TREAT ETHAN? WHY IS IT FAIR THAT ETHAN NOT ONLY HAS TO FEEL HUNGRY THE RESTO F HIS LIFE, BUT HAS TO FEEL DIFFERENT AND BE TREATED DIFFERENT.

ETHAN WENT THROUGH SURGERY TO GET HIS G-TUBE PLACED SINCE HE WAS UNABLE TO EAT ON HIS OWN. 2 DAYS LATER AFTER 27 LONG DAYS WE WERE FINALLY ABLE TO TAKE HIM HOME.

                                                       ETHAN'S FIRST DAY HOME