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