THE DOCTORS DON'T KNOW ANYTHING

OK NOW I AM GOING TO TELL YOU ABOUT WHAT HAS BEEN HAPPENING FOR THE PAST COUPLE OF MONTHS. I HAVE BEEN CALLING AND CALLING JOSHUA'S GEENTIC DOCTORS. I HAVE SPOKEN TO HIS ASST. I HAVE TOLD HER THAT I HAVE BEEN LOOKING IN BOOKS AND IN TH INTERENET ABOUT MY SONS CHARACTERISTICS AND THINGS THAT HE HAS BEEN DOING. I THOUGHT IT COULD BE THE PRADER WILLIE SUNDROME AND SHE TELLS ME NO WE THOUGHT THAT TOO BUT IT CAME OUT FINE. SO I ASLO TOLD HER THAT CAN'T THEY DO A FISHING TEST, MAYBE THEY CAN FIND SOMETHING THAT HE MAY BE MISSING A CHROMOSOME. SHE TELLS ME WELL THE CGH TESTING THAT THEY DID TELLS THEM IF HE IS OR NOT MISSING ANYTHING OR IF HE HAS ANY SYNDROMES. WHAT GOT ME MAD WAS THAT SHE TELLS ME THAT I AM THE ONLY PAENT THAT CALLS ABOUT THERE CHILD. WELL LET ME SEE NOW, IF YOU HAVE A CHILD THAT HAS PROBLEMS AND THE DOCTORS WON'T GIVE YOU ANY ANSWERS YOU WILL KEEP ON CALLING AND ASKING MORE QUESTIONS RIGHT?

SO WHAT I DID WAS I TOOK HIM TO ANOTHER GENETICS PLACE, CALLED ALL CHILDRENS HOSPITAL. HE GOES TO THE OUTPATIENT CARE. IT'S A CLINIC. HE WENT THERE FOR THE RENAL DOCTOR AND TOLD ME THAT I HAVE TO WATCH IT AND HE GAVE ME MORE ANSWERS ON HIS KIDNEY. HE CAN PEE NOT ENOUGH LIKE HE IS SUPPOSED TO. BUT THE GNETICS THAT JOSHUA IS SEEING ASKED ALL THE QUESTIONS AND I GAVE HIMA LL THE ANSWERS. THEY DECIDED TO TAKE SOME BLOOD FROM HIM FOR METABOLIC DISORDERS. IF EVERYTHING IS FINE THEY WANT TO TAKE A MUSCLE BIOSPY TO SEE WHY HE IS LOW TONE. AS LONG AS THEY DON'T GIVE UP AND TAKE TESTS ON HIM AND I'M GETTING MORE ANSWERS THEN I AM FINE.

MY SON HAS PROGRESSED SINCE LAST YEAR. HE STARTED WALKING IN HIS WALKER BACKWARDS. HE IS GETTING MORE STRENGTH ON HIS LEGS. HE IS GETTING HEAD STRENGH TOO. HE CAN HOLD HIS HEAD UP MORE THEN EVER. HE IS GRABBING HIS BLANKETS, HE GRABS HIS PACIFIER AND HOLDS IT. I'M TRYING TO MAKE HIM HOLD HIS BABY COOKIE INSTEAD OF PUTTING HIS HANDS IN HIS MOUTH. THATS THE ONLY PROBLEM THAT WE HAVE IS THATBOTH OF HIS HANDS GO INTO HIS MOUTH. IT LIKE SOOTHS HIM. BUT IF HE WOULD STOP THEN HE CAN DO MORE THINGS.

WELL THANK YOU SO MUCH FR READINGMY SONS STORIES. IF YOU HAVE ANY QUESTIONS PLEASE FEEL FREE TO ASK ME ANYTHING.

This is what I found out 07/18/2010

Well since my last post, I found out some other things. My sons seizures has died down. I haven't seen anything ina bout 4 months. Now that is too good. Now One day I told myself not to give up and keep on trying to find out about Joshua. So I looked online on genetics disorders and birth defects. There was one article that tells about my pregnancy. I had too much amnitioc fluid and he wasn't moving alot in my belly. And things happen after a couple of months that appears not after birth. It happens a while after birth. He has a diamond shaped eyes, He has a high narrow head, and he he is developmetnal delayed etc. It all comes out to be the prader willi syndrome. Even though I don't want to admit it that he does have something. Now, the dr's from genetics and his neurologist told me that they took a chromosome testing of the syndromes on what i told you and they said it came out negative. They thought the same thing. so if they took that testing of the prader willi syndrome then what can it be? noone still doesn't know. To me it is good in a way, because He is my son and you know when it comes out that it is your son you don't want to label him or her as a syndrome right?

Also I am going a little crazy here becasue I am still not working and I hear about work from home moms and I can't find any good sites on it. How do I know that it is legitate? If anyone does read this please contact me? Thank you.

Cheryl 'Pepsii' Riley - Thanks For My Child

Whitney Houston - Count On Me Featuring CeCe Winans

MOTHERHOOD

FOR A MOTHER OF THREE BOYS AND ONE WITH SPECIAL NEEDS IT'S PRETTY HARD. MY OTHER TWO OLDEST BOYS ARE 11 AND THE OTHER IS GOING ON 7 SOON. THEY CAN ACTUALLY MANAGE DOING THINGS AROUND THE HOUSE. BUT MOST OF THE TIME THEY DON'T WANT TO DO ANYTHING, BUT TO PLAY PLAYSTATION AND SOMETIMES THEY DON'T WANT TO EAT. BUT JUNK FOOD. WITH MY LITTLE BABY BOY JOSHUA, I HAVE TO FEED HIM THROUGH HIS BUTTON. HE IS DOING A LOT BETTER SINCE HE HAD SURGERY. HE IS GETTING A LOT BETTER. HE IS GAINING MORE WEIGHT. HE IS NOW AT 20 IBS AND A 1/2 OZ. HE ROLLS OVER, SOMETHING HE COULDN'T DO BEFORE. THAT MADE ME VERY HAPPY. HIS NEUROLOGISTS TOLD ME IF I DIDN'T SAY THIS BEFORE, THAT HE MAY NOT DO ANYTHING EXCEPT FOR TO SIT. BUT SINCE I TOOK HIM TO THAT HEALER IN ORLANDO THAT HE, MY SON PROVED HIM SO WRONG. HIS DRAW DROPPED WHEN HE SAW HIM. MY SON, JOSHUA ROLLED OVER FROM FRONT TO BACK AND FROM THE BACK TO THE FRONT. HE PICKED HIM UP AND HE TOLD ME 'IS THERE ANYTHING THAT I CAN DO FOR YOU" EXACT WORDS. I TOLD HIM NO. I'M GOOD. HE WAS SO SHOCKED. BUT HE TOOK AN UPDATED EEG TO SEE ABOUT THE SEIZURES AND HE IS STILL THE SAME. FROM LAST IT WAS A TINY BIT BETTER. BUT HE STILL HAS THE SPIKES.

JOSHUA WENT ABOUT A MONTH AGO TO FIT FOR HIS WEELCHAIR/STROLLER CHAIR. IT LOOKS REAL CUTE. IT'S FOR HIM TO SIT IN IT STRAIGHT AND TO PUT HIS HEAD STRAIGHT UP WITH OUT HIM SLOUCHING. I'M ALWAYS CARRYING HIM AND HE IS GETTING VERY HEAVY. BUT HE WILL DO GOOD IN IT. THEN HE IS GETTING THE BATH TUB BECAUSE HE CAN'T FIT IN THE BABAY ONE. OF COURSE NOT HE IS 22 MONTHS OLD. HE IS GETTING TO HEAVY AND TOO BIG. AND HE IS ALSO GETTING A STANDER. SO HE CAN STAND UP ON IT STRAIGHT. HE IS ALWAYS LAYING DOWN. BUT HE WILL DO BETTER. NOW IT IS THE WAITING GAME WITH HIM.

BUT LIKE I WAS SAYING BEING A MOTHER IS HARD WITH TAKING CARE OF A SPECIAL NEEDS BOY. THEY NEED A LOT OF ATTENTION. A LOT OF LOVE. PLUS I WOULD HAVE TO CLEAN THE HOUSE AND COOK AND HELP MY OTHER TWO BOYS WITH THERE HOMEWORK. YES THE DAD IS HERE TOO BUT HE HELPS TOO. BUT I DON'T REALLY HAVE THAT MANY FRIENDS OUT HERE. I WAS LOOKING FOR SOME MOTHERS GROUP OUT HERE THAT I CAN INTERACT WITH OTHER MOMS BUT THERE ISN'T ANY OUTSIDE OF THE INTERNET. BUT THERE ARE SOM WEBSITES THAT ARE FOR MOTHERS AND PARENTS. IF ANYONE DOES READ THIS PLEASE CONTACT ME THROUGH MY EMAIL IF YOU DON'T SEE IT ON MY BLOGGER HERE IS MY EMAIL
ISAIAHGABBY1@YAHOO.COM.

NOVEMBER 13TH 2009

I AM IN THE HOSPITAL. IT IS 6:18PM.I HAV BEEN HERE SINCE NOVEMBER 12TH AT 7:45AM. MY SON JOSHUA WAS HERE FOR TESTING TO SEE WHAT KIND OF G - TUBE HE WOULD NEED. I FOUND OUT THAT HE NEEDS THE TUBE THAT COMES OUT OF THE STOMACH. AND I FOUND OUT THAT HE HAS REFLUX SO HE NEEDS ANOTHER SURGERY WITH THE OTHER ONE. IT IS CALLED THE WRAP FOR THE STOMACH SO WHEN HE DRINKS THE REFLUX DOESN'T COME UP. I WAS SUPPOSED TO COME HOME TODAY BUT THE GI DOCTOR TOLD ME THAT IF WE CAN STAY BECAUSE THE ULTRASOUND SHOWS THAT MY SON HAS A SWOLLEN KIDNEY. ONCE HE DIDN'T URINATE FOR TWO DAYS. THAT WAS VERY WEIRD TO ME. SOMETHING WAS BLOCKING IT BECAUSE WHEN HE WENT TO SEE HIS DR , ACTUALLY THE NURSE HAD TO PUT A CATHERTRA IN HIS PENIS TO SEE IF HE CAN PEE. SURE ENOUGH HE DID PEE, ALL OVER THE NURSE. IF IT'S NOT ONE THING IT'S ANOTHER. THE SURGERY ISN'T GOING TO TAKE PLACE ANY TIME SOON. I WILL HAVE TO MAKE AN APPOINTMENT. IT WILL PROBABLY BE AFTER THANKSGIVING. I AM HAVING COMPANY OVER NEXT WEEK. AN EARLY THANKSGIVING DINNER WITH MY BROTHER IN LAW AND HIS FAMILY. THEY NEVER SAW THERE GOD SON, WHICH IS JOSHUA. I WISH THIS NEVER HAPPENED TO MY SON. SOME TIMES I WONDER DID I DO SOME THING WRONG WHEN I WAS PREGNANT? I KNOW PEOPLE WOULD SAY NO YOU DIDN'T DO ANYTHING WRONG. I ALREADY KNEW HE REALLY DIDN'T MOVE A LOT IN MY BELLY. HE MOSTLY SLEPT. WELL LET ME GO BACK TO MY BABY. I WILL WRITE MORE UPDATES SOON ON THE SURGERY ETC. HAVE A GREAT NIGHT..

the update of my son joshua

WELL THIS IS MY UPDATE OF MY SON. SINCE THE LAST POST, HE WAS DOING A LOT BETTER. HE WAS CALMING DOWN WITH THE SEIZURES. ABOUT CLOSE TO TWO WEEKS AGO, HE WAS LOOKING VERY WEAK, NO COLOR TO HIM, AND NOT DOING ANYTHING. SO HE HAD A APPOINTMENT TO HIS PEDETRICIAN. THEY SAID HE SOUNDED A LITTLE FUNNY. SO THEY GAVE HIM A NEBULIZER. ONCE I STARTED IT HIS FINGERS WERE TUERNING BLUE. SO MY MOTHER WAS CALLING THE NURSE. SO WE TOLD THEM WHAT HAPPENED. THEY CALLED THE AMBULANCE. THE HOSPITAL WAS RIGHT DOWN THE BLOCK FROM THERE. THANK GOD FOR THAT. THEY TOOK HIM IN QUICKLY. HE ALWAYS HAD A PROBLEM GETTING BLOOD FROM HIM. THEY NEVER COULD FIND HIS VEINS. WELL THEY COULDN'T GET ONE ON HIS HEAD, NOT IN HIS ARMS, NOT ON THE LEGS, AND THEY COULDN'T GET ONE ON HIS NECK. SO THEY HAD TO DO A CENTRAL LINE IN HIS GROIN. IT WAS A PROCEDURE SO I COULDN'T BEE IN THERE. ONCES THEY DID THAT THEY GAVE HIM SOME LIQUIDS AND THEY TOOK SOME BLOOD TESTS. HE WAS DOING BETTER AGAIN. HIS TEMP WASN'T NORMAL. IT WAS 96.5. SO THEY SAID THAT IT WAS HYPOTHERMIA. I DON'T UNDERSTAND THAT. AND THEY TOOK AN X RAY. THAT SHOWED THAT HE HAD NUEMONIA. HOW THE HECK MY SON GOT NUEMONIA AND HYPOTHERMIA? THEY SAID THAT HE CAN GET IT FROM KIDS WHO GO NEAR HIM WHO ARE SICK. I HAVE TWO OTHER BOYS AND THEY WEREN'T SICK. BUT THEN AGAIN THEY GO TO SCHOOL. EVERY TIME THEY COME HOME FROM SCHOOL I TELL THEM TO GO WASH THERE HANDS BEFORE THEY TOUCH HIM. ANYWAYS, THEY GAVE HIM SOME ANTIOBIOTIC CALLED CEFDINIR FOR THE BACTERIA. WHAT EVER IS THERE IT WILL KILL IT. THEN HIS NUEROLOGIST UPPED HIS KEPPRA MEDICATION. SO YOU CAN SAY HE WAS ON 4 MEDICATIONS. WHEN I FINALLY GOT OUT OF THE HOSPITAL, HE WAS ACTING A LITTLE DIFFERENT. HE STARTED YELLING AND SCREAMING. HE HASN'T REALLY SLEPT. HIS MOUTH HAD ALL WHITE STUFF ON IT. I'M ASKING MYSELF WHAT IS THIS? SO HE HAD A FOLLOW APPT WITH HIS PEDETRICIAN. SO I TOLD HIM ABOUT IT AND HE SAID THAT IS CALLED THRUSH. IT IS FROM THE CEFDINIR. AND SO HE GAVE ME ANOTHER ANTIBIOTIC CALLED NYSTATIN FOR THRUSH. I HAVE TO GIVE IT TO HIM 2 TIMES A DAY FOR THREE WEEKS. IT IS GONE ALREADY BUT I STILL HAVE TO GIVE IT TO HIM. NOW HIS HEAD IS GOING SIDE TO SIDE. HE NEVER DONE THAT EITHER. NOW I HAVE TO FIGURE IF THAT IS FROM THE CEFDINIR OR THE NYSTATIN OR WHAT? HE DID THAT WHEN I WAS COMING OUT FROM THE HOSPITAL. I REALLY HATE MEDICATION FOR MY SON. HE HAS BEEN THROUGH SO MUCH. I FEEL SO BAD AND SO USELESS. SOME TIMES I CA'T SLEEP AT NIGHT BECASUE SINCE HE IS TEETHING HE IS CRYNG TWICE A NIGHT. I HAVE TO CALM HIM DOWN. THANK YOU SO MUCH FOR LISTENING TO WHAT I HAVE TO SAY ABOUT MY SON JOSHUA. I JUST NEED TO TALK TO SOMEONE THAT IS IN THE SAME BOAT AS I AM. I HAVE BEEN DEALING WITH THIS FOR ABOUT 11 MONTHS. WE ALL HAVE PRAYED ON HIM. I HAD A PASTOR COME TO THE HOSPITAL WHEN I WAS THERE THE 1ST TIME AND HE PRAYED OVER MY SON. WHAT ELSE CAN I DO? THE ONLY THING THAT I HATE IS THAT I HAVE TO JUST WAIT IT OUT. I WOULD LIKE TO DO SO MUCH FOR MYSELF AND FOR HIM AND I CAN'T REALLY DO ANYTHING. IF ANY ONE CAN HELP ME OUT WITH SOME INFORMATION ON ANYTHIN I WOULD LOVE SOME FEED BACK.