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.