HELLO - TODAY IS MAY 1, 2004 - MY SON NICHOLAS HAS HPE SEMI LOBAR AS WELL AS DIBETICS INSIPIDUS & REFLEX. HE IS DOING VERY WELL. HE WILL BE TURNING 3 YEARS OLD MAY 18TH. YES THE ROAD HAS BEEN HARD, IN MANY WAYS, BUT SO WORTH IT. MY SON IS SO INPIRING & HE IS MY HERO. HE IS SO SO BEAUTIFUL IN SO MANY WAYS. THE GIFT IS THEY TRULY TEACH US HOW TO LIVE LIFE & TO REALLY VALUE & APPRECIATE EACH DAY. NICHOLAS WILL BE STARTING SCHOOL SOON, WITH SPECIAL NEED CHILDREN THE AGE FOR MASSACHUSETTS IS 3 YEARS OLD, HE HAS BEEN GETTING EARLY INTERVENTION AT HOME & IT HAS DONE WONDERS, SPEECH, PHYSICAL & OCCUPATIONAL THERAPY. NICHOLAS HAS HAD HIS 2ND SET OF EAR TUBES PUT IN HIS EARS & THEY ARE WORKING OUT WONDERFULLY, NO MORE EAR INFECTIONS SO FAR :O) NICHOLAS CAN UNDERSTAND MORE THEN WE REALIZE, HE IS EXTREMEMLY SOCIAL & SO GOOD NATURED. HE IS SUCH A LOVING LITTLE MAN. WE HAD HIS FILMS READ JUST RECENTLY WITH THE CARTER CENTER & HAD GOTTEN EVEN BETTER NEWS ON HIS CONDITION. NICHOLAS HAS THE MILDER CASE OF HPE SEMI LOBAR & PARTIAL DIEBETIC INSIPIDUS, HIS BRAIN IS FORMED NORMAL IN SEVERAL AREAS & A SMALL AREA IS AFFECTED. IF HIS HEALTH MAINTAINS AS WELL AS HE IS DOING - I WAS TOLD NICHOLAS COULD HAVE A NORMAL LIFE SPAN :O) EVEN STILL WITH NICHOLAS BEING BETTER OFF WITH HIS SYMPTOMS WITH HPE, HE STILL WILL HAVE A TRYING ROAD. HE WILL HAVE TO WORK TWICE AS HARD & OVER COME SEVERAL OBSTACLES. BUT I BELIEVE WITH LOT'S OF LOVE & PRAYER WE WILL GET THERE. IT HAS DONE SUCH WONDERS ALREADY. NICHOLAS IS AMAZING, HIS STRENGTH, HIS DETERMINATION. HE INSPIRES ME! EVEN WITH SO MUCH AGAINST HIM HE TRYS SO HARD & FIGHTS TO SUCCEED. "O) I AM SO PROUD OF HIM & GRATEFUL TO HAVE HIM. HE IS TRULY A GIFT IN MY LIFE. I COULD NOT IMAGINE MY LIFE WITH OUT. NICHOLAS DOES TEND TO BITE HIS FINGERS, VERY COMMON AGAIN FOR HPE. I DO MITTEN HIM TO PREVENT HIM FROM HURTING HIMSELF. BUT I DO NOT WANT TO RESTRICT HIM FROM UTILIZING HIS HANDS FOR GRASPING & HOLDING ETC. I HAVE ORDERED AN ITEM CALLED THE NO NO SPLINT THAT WILL HELP WITH HIS BITING, IT GOES ON THE ELBOWS SO IT STOPS HIM FROM REACHING HIS HANDS TO HIS MOUTH & IT ABLES HIM TO USE HIS HANDS FREELY. SHOULD BE A HUGH PLUS. NICHOLAS HAS INCREASED HIS FEEDINGS TO 5 BOTTLES OF PEDISURE A DAY - HIS DIEBETICS IS CARED FOR BY FREE WATER. SO EACH BOTTLE IS 1 1/2 OZ WATER TO 6 1/2 OZ OF PEDISURE. THIS WORKS VERY WELL FOR HIM. HE HAS BEEN DOING GREAT. HE ALSO HAS A GOOD SIZE MEAL A DAY AS WELL. MUSHED FRESH FRUITS, YOGURT, HE LOVES BANANA'S - STRAWBERRIES, CANTALOPE, PEARS, PEACHES, PINEAPPLE, APPLESAUCE, OATMEAL, ICE CREAM, WHIP CREAM, CREME CHEESE, MASH POTATOS, SQUASH, ETC.. - I GET ALL FRESH PRODUCE & PUREE IT IN A BLENDER, IT WORKS OUT GREAT, I DON'T MAKE IT TO DRINK FORM, I JUST HAVE IT MUSHY, HE IS GETTING USE TO DIFFERENT TEXTURES & FOODS. I WANT TO INTRODUCE MORE ITEMS TO HIS SPECIAL DIET - ALOT OF FOODS DO HAVE HIGH SODIUM LEVELS, USING FRESH PRODUCE HELPS ELIMATE THAT. NICK CAN SPEAK SEVERAL WORDS & EVEN PHARSES. HE CAN SAY I LOVE YOU, CLEARLY IT IS AWESOME, HE SAYS ARNOLD, HE LOVES THE SHOW HEY ARNOLD, HE SAYS MORE, UP, WOW, BUBBLES, MAMMA, OH YEH, LOVE, NO, OUCH, & A FEW OTHERS. HE TRIES TO CRAWL LIKE A LITTLE BUGGER, HIS LEGS GO LIKE CRAZY, HE GETS THERE BUT IT TAKES HIM TIME. HE DOES NOT WALK OR SIT BY HIMSELF. WE HAVE ORDERED SOME NEW DEVELOPMENTAL ITEMS, THE SMART WALKER - THE ALLIGATOR CRAWLER & A FEW OTHER THINGS THAT WILL HELP HIM ALONG AS WELL AS WE ARE GOING TO BE INTRODUCING BOTOX TO HELP REDUCE SOME OF THE TONE SO HE WILL BE ABLE TO DO SOME OF THESE THINGS.. BOTOX SERIES WILL START IN JUNE, & HIS OTHOPEDIC SPECIALIST THINGS IT WILL DO NICHOLAS A WORLD OF GOOD. NICK SLEEPS ON AVERAGE VERY WELL, WE DO HAVE SELECTIVE NITES THAT ARE DISRUPUTED OR HE JUST HAS A HARD NITE. THIS IS USUALLY WHEN HE IS NOT FEELING HIMSELF. A COLD - SINUS INFECTION - ETC. BUT FOR THE MOST PART HE WILL SLEEP FROM 10:20 TO 7-8 OCLOCK. HE IS A NIGHT HAWK. HE HAS BEEN DOING TERRIFIC WITH HIS REFLEX - WE MAINTAIN HIS REFLEX WITH PRILOSEC HE HAS BEEN ON THE SAME DOSE SINCE HE WAS 5 MONTHS OLD, SEEMS TO DO THE TRICK ALONG WITH MYLANTA 3 TIMES A DAY. NICHOLAS IS GROWING AT A NORMAL PACE FOR HIM, HE IS STAYING ON THE CURVE OF HIS CHART. HIS LENGTH IS LONG & HIS WEIGHT IS AVERAGE. HE IS NOT OVER OR UNDER - MAINTAINING. HE WEIGHTS 23 1/2LBS & HE IS IS 34 INCHES LONG. HE IS CUTE AS HECK. SO GORGEOUS, HE HAS BEAUTIFUL EYES, HIS LITTLE BODY IS SO PERFECT. I'D LIKE TO SEE HIM WITH A LITTLE MORE WEIGHT ON - OTHER THEN THAT HE IS STAYING HEALTHY & SUCH A HAPPY CAMPER. HPE CHILDREN TEND TO HAVE A STRUGGLE WITH WEIGHT & SIZE. I AM PLEASE WITH NICHOLAS & HOW HE IS COMING ALONG. SO FAR THINGS ARE GOING WELL & I AM HAPPY WITH HIS PROGRESS, I REALIZE THINGS WILL TAKE TIME & THAT IS OK, I AM BLESSED TO HAVE SUCH A WONDERFUL LITTLE MAN. I KNOW IN HIS OWN WAY & IN WHEN HE IS READY HE WILL GET THERE. FOR NOW WE ENJOY ALL THE QUALITY TIME WE SHARE TOGETHER. THAT TOO IS A GIFT. THE BEST THING I WAS EVER GIVEN WAS MY CHILDREN, MOTHERHOOD IS WONDERFUL. SO THIS IS MY JOURNAL NOTES FOR NOW, I WILL KEEP IT POSTED, IT IS ALWAYS NICE TO HEAR THE POSITIVE & BEAUTIFUL OUTCOMES. OUR CHILDREN ARE MIRACLES - THEY ARE OUR GIFTS. XO