HELLO MY STORY BEGINS WITH HAVING A PRETTY AVERAGE PREGNANCY, GAIN ALOT OF WEIGHT MORE THEN I NEEDED TO, I DID HAVE TROUBLE CONCEIVING NICHOLAS, I FINALLY GOT PREGANT BY IVF PROCEDURE. I WAS 38 YEARS OLD, NICHOLAS IS MY SECOND CHILD. I HAD NO SERIOUS COMPLICATIONS, THE NORMAL STAGES OF PREGANCY. REGULARLY CHECKUPS - ALL THE ROUTINE ULTRASOUNDS - THEY** WERE ALL NORMAL ** NO INDICATION OF MY SON'S BIRTH DEFECT. I WENT IN TO THE HOSPITAL 2 WEEKS OVER DUE, WAS INDUCED - HAD MY SON, HE WAS PERFECT, A TRUE BLESSING. AT FOUR MONTHS OLD, I NOTICED & QUESTIONED HIS BONE STRUCTURE ON HIS HEAD, AT FIRST THE DOCTORS WEREN'T THAT CONCERN, THEN A NURSE FOR NICHOLAS'S REFLEX HAD ALSO MENTIONED THE SIZE OF HIS HEAD TO ME, WE AGREED FOR PEACE OF MIND TO DO A CT. THE CT SHOWED NICHOLAS HAD HOLOPROSCENCEPHALY SEMI LOBAR, WE WERE DEVASTED, SCARED, CONFUSED. I FELT LIKE MY WHOLE WORLD WAS CRASHING DOWN, I DID NOT KNOW WHAT THIS MEANT FOR MY BEAUTIFUL LITTLE MAN. IT WAS A VERY EMONTIONAL TIME FOR US, BUT WE HAVE GROWN ALOT WITH TIME & BY LEARNING MORE ABOUT THE BIRTH DEFECT, & FROM MY SON HIMSELF. HE TEACHES US EACH DAY. HE IS TRULY A GIFT. I CAN NOT IMAGINE MY LIFE WITH OUT HIM IN IT. HE IS SO SO GOOD NATURED!! HE LIGHTS UP A ROOM. HE IS NOW 16 MONTHS OLD, IT HAS BEEN A TUFF ROAD, BUT VERY MUCH WORTH IT. IT HAS GOTTEN ALOT EASIER AS HE GETS OLDER. NICKS DIET IS NOW SPECIAL, HE IS ON A SODUIM FREE DIET, DUE TO RECENTLY THIS PAST AUGUST WE FOUND OUT / NICHOLAS HAS DIABETICS INSIPIDUS WHICH IS COMMON FOR HPE BABIES. WE DID NOT REALIZE ABOUT THIS CONDITION UNTIL WE FOUND OUT FROM A ROUTINE BLOOD TEST DURING OUR GENETIC APPOINTMENT THAT HE HAD DI (DIABETICS INSIPIDUS). WE NEED TO HAVE HIS LEVELS CHECKED FREQUENTLY - EXSPECIALLY WHEN HE DEVELOPES EAR INFECTION/COLD...OR WHEN THE WEATHER IS WARM OUT, THESE THINGS CAN ALTER HIS LEVELS - SO IT NEEDS TO BE WATCHED MORE SO THEN. HE DRINKS BY BOTTLE,HE DRINKS WELL - ON AVERAGE DRINKS 8 OZOR MORE - 4 X'S A DAY - HE IS SPOON FED AS WELL HE CAN EAT PEOPLE FOOD BUT WITHIN HIS DIET & IT NEEDS TO BE MUSHED. HE LOVES FRUITS. HE IS GAINING & GROWING AT A GOOD PACE FOR HIM. HE IS VERY LONG - THE DOCTORS ARE VERY HAPPY WITH HIS PROGRESS. WE KEEP UP WITH ROUTINE SCHEDULED APPOINTMENTS - HE HAS EARLY INTERVENTION THERAPY WHICH IS A GREAT HELP. HIGHLY RECOMMEND HAVING THERAPY. NICHOLAS HAS PHYSICAL & OCCUPATIONAL THERAPY WEEKLY & JUST RECENTLY STARTED SPEECH THERAPY. HE HAS DONE SO VERY WELL WITH THIS AIDED TREATMENT. HE HAS MUCH FREE-ER MOVEMENT, NOT SO MUCH TONE. HE IS MORE RELAXED & IS MORE FLEXIBLE. MY LITTLE MAN IS SO BEAUTIFUL & SO AWARE & ATTENTIVE. I FIND HIM AMAZING. HE CAN COMMUNICATE IN HIS OWN WAY. NICHOLAS UNDERSTANDS ME VERY WELL. WE HAVE SUCH A REMARKABLE BOND. NICHOLAS HAS VERY GOOD VISION HE CAN SEE, HE CAN HEAR - HE HAS HAD NO SEIZURE ACTIVITY & HE HAS BEEN TESTED SO FAR IS DOING VERY WELL *THANKGOD*!! NO FACIAL DEFECTS, HE IS PERFECT IN SO MANY WAYS. DEVELOPMENTALLY HE IS BEHIND THE NORMAL LEVEL FOR HIS AGE, BUT I BELIEVE - HE WILL ONE DAY GET THERE, IN THIS LITTLE AMOUNT OF TIME - HE HAS SHOWN SO MUCH IMPROVEMENT. I AM HAPPY THAT HE IS AS WELL AS HE IS, I AM SO VERY GRATEFUL FOR ALL OF THAT. HE NOW ENJOYS THE CAR, WHERE WHEN HE WAS YOUNGER IT WAS VERY HARD TO GO ANYWHERE, FOR HE DISLIKED BEING IN THE CAR (POSSIBLE DUE TO HIS REFLEX/TONE). BUT NOW HE ENJOYS IT :O}, IT IS A PLEASURE TO BE ABLE TO GO ANYWHERE WITH HIM. HE AMUSES HIMSELF WITH ITEMS I HANG UP IN THE CAR TO MAKE THE RIDE MORE ENJOYABLE FOR HIM AS WELL. HE LIKES BEING IN HIS WALKER, HE TAKES LITTLE STEPS WHILE IN IT. HE MOSTLY ENJOYS WATCHING TV, HE LOVES ANYTHING WITH MUSIC. HE IS SENSITIVE TO LOUD NOISES, HE RELATES TO EMONTION. HE IS SO ATTENTIVE, VERY ALERT, EXTREMELY AWARE & RESPONSIVE. NICHOLAS HAS SHOWN US SO MANY REMARKABLE DEVELOPMENTS AND PROMISE FOR HOPE FOR HIS FUTURE. HE HAS FILLED OUR HEARTS!!! NICHOLAS HAS TOUCHED OUR LIVES IN SUCH A UNIQUE & SPECIAL WAY. HE IS A JOY, A VERY WONDERFUL & LOVING LITTLE MAN. I DO THANK GOD FOR SENDING HIM TO ME. HE IS A BEAUTIFUL GIFT. I WANT TO TELL THE MOMS & DADS OF CHILDREN WITH HPE TO BELIEVE IN MIRACLES TO BELIEVE IN YOUR CHILD. TO HOPE & PRAY - IT CAN DO WONDERS... I HAVE SEEN IT. DON'T GIVE UP HOPE - MIRACLES DO HAPPEN!!! GOD BLESS... BEST WISHES........