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Zulieka-Danielle Mora 
Zulieka is a TWO IN HALF YEAR OLD GIRL WITH SANFILIPPO III TYPE A. A GENETIC DISORDER THAT WITHIN TIME WILL DECREASE HER MENTAL AND PHYSICAL ABILITY. SHE WAS SUCCESFULLY TRANSPLANTED ON 10/28/04. ZULI HAS GRAFTED. WE HAVE BEEN HOME SINCE JANUARY 2005 AND ZULI IS DOING O.K. ZULI IS LISTED UNDER COTA, FL, ZULIEKA, IF ANYONE WOULD LIKE TO DONATE, ANYTHING WOULD BE APPRECIATED. GOD BLESS AND THANK YOU!!
Journal
Monday, March 19, 2007 6:02 AM CDT I HAVE FINALLY A MOMENT TO WRITE IN TODAY'S JOURNAL. WE HAVE HAD A RECURRING ISSUE WITH LICE ON ZULI'S HEAD OF COURSE. I AM CONSTANTLY SHAMPOOING HER HAIR BUT SOMEHOW SHE STILL GETS THEM AND YOU WANT TO KNOW WHAT'S IRONIC; THE SCHOOL NOR THE DAY CARE WILL ADMIT TO ANYONE HAVING THEM. THE SCHOOL SAYS THAT THEIR ARE ONLY FIVE OTHER KIDS IN HER CLASS ROOM AND EVERYTHING IS PUT AWAY SEPARATE AND ALWAYS SANATIZED. ON THE OTHER HAND WHEN I TALK TO THE DAY CARE WHICH OF COURSE HAS DOUBLE THE KIDS AND SHARE OF COURSE EVERYTHING THE ADMINISTRATOR STATES THAT SHE IS NOT GETTING THEM FROM THE DAY CARE. WHAT OTHER MEASURES CAN I TAKE?
I WOULD LIKE YOU ALL TO KNOW THAT WITH THE HELP OF TRACY NICHOLLS THE PENNY NICHOLLS FOUNDATION AND ALSO THE LAUREN REED FOUNDATION HAS MADE IT POSSIBLE FOR ME TO TRAVEL TO NORTH CAROLINA TO SEE DR. ESCOLAR. SHE TESTS KIDS WITH SANFILIPPO AND OTHER DISEASES TO SEE HOW THEY ARE DOING DEVELOPMENTALLY. I WILL BE LEAVING FLORIDA ON APRIL 9TH AND WILL RETURN APRIL 11TH. HER STUDIES WILL BE DONE ON THE 10TH GIVING US SOME TIME TO PERHAPS GO SEE DR. KURTZBERG AT DUKE'S.
WELL I WILL LET YOU ALL KNOW THAT ZULI FOR OVER TWO MONTHS WAS HAVING A CONSTANT SMELL COMING FROM HER NOSE. AT FIRST I THOUGHT THAT IT WAS HER MOUTH, THAT SINCE SHE IS GETTING OLDER AND GIVES ME A HARD TIME TO BRUSH HER TEETH THAT PERHAPS SHE HAD A ROTTEN TOOTH OUR HER BREATHE WAS UNBEARABLE. BUT WE DID GO TO THE DENTIST AND EVERYTHING WAS FINE. I TOOK HER TO THE DOCTOR TWICE FIRST THEY SAID THAT IT COULD BE SOME ALLERGIES AND TO WAIT AWHILE AND SEE WHAT HAPPENS SINCE SHE HAD BEEN ON ANTIBIOTICS. WELL NO THAT DIDN'T WORK AND I BROUGHT HER IN AGAIN AND SHE STILL HAD THAT ROTTEN SMELL. THE DR. SUGGESTED THAT IT COULD BE HER SINUSES AND GAVE ME SOME ZYRTEC TO HELP OUT WITH ALLERGIES. THAT DID NOT WORK. I FINALLY TOOK HER IN AGIAN AND I ASKED FOR HER ORIGINAL DR.; TOLD THE DR. THAT THIS SMELL WAS UNBEARABLE AND THAT THE TEACHER IS EVEN COMPLAINING. WE LAID HER DOWN SOMETHING THAT SHE HATES AND HE LOOKED INSIDE HER NOSE, FINALLY HE SAYS I SEE SOMETHING PERHAPS TISSUE. WELL WE HAD TO HOLD HER DOWN AND HE GOT SOME TWEEXERS AND PULLED OUT A TINY PIECE OF SPONGE. YES, I SPONGE AND IF YOU ASK ME HOW IT GOT THEIR I COULD NOT ANSWER. I AM CONSTANTLY WATCHING EVERY MOVE SHE MAKES AND I AM ALWAYS THERE. BUT PERHAPS ONE TIME I DID SLIP AND FOR A QUICK INSTANT SHE PUT THAT PIECE OF SPONGE IN HER NOSE. UNBELIEVABLE, BUT I THANK GOD THAT'S ALL IT WAS.
TOMORROW WE HAVE A DR. APPT WITH THE DENTIST. THOSE TWO BOTTOM FRONT TEETH HAVE BEEN LOSE FOR AWHILE AND I THINK IT'S TIME THEY COME OUT. SHE IS TURNING FIVE AND THE DENTIST STATES THAT THIS IS THE TIME THEY DO LOSE THEM.
I HAD TWO HERNIAS REPAIRED ON 2/21 AND HAVE BEEN OUT OF WORK FOR ABOUT A MONTH. WENT FOR MY POST-OP VISIT AND ALL TURNED OUT O.K. EXCEPT THAT ON FRIDAY I FELT WIERD AND MY STOMACH FELT AS IF I HAD DRANK A GALLON OF WATER. I WENT TO SEE THE DR. AND OF COURSE WHY DIDN'T I THINK OF THAT, I HAVE SOME FLUID LEFT IN MY STOMACH. THE DR. DID REMOVE ABOUT 5 SYRINGES OF IT AND SAID THAT IF TODAY I HAD MORE LEFT (WHICH I DO) HE WILL HAVE TO PUT SOME DRAINAGE SO IT COULD COME OUT. WOW1 HOW EXCITING!!
MY 13 YEAR OLD WILL BE GRADUATIN FROM 8TH GRADE THIS JUNE AND SHE IS NOW PLAYING BASEBALL. HER NAME IS KASSANDRA SHE HAS PLAYED BALL BEFORE THEN GAVE IT UP (DIDN'T LIKE THE COACH) NOW SHE'S PLAYING AGAIN. MY FIFTEEN YEAR OLD WELL OF COURSE A TEENAGER AT THE MOST. SHE IS IN 2ND YEAR OF HIGH SCHOOL AND HAS LOW AVERAGE POINT. BUT HAS FINALLY DECIDED THAT SHE NEEDS TO DO BETTER AND IS STAYING OF SCHOOL TO BRING UP HER GRADES.
MY TWO OLDER ONES LIVE NEXT DOOR, ONE IS EVELIZ AND SHE HAS A 6 YEAR OLD BOY AND THE OTHER ONE IS JASMIN AND HAS A 6 YEAR OLD GIRL, THEY ARE TAKING CLASSES TO ENTER THE LPN PROGRAM THIS COMING AUGUST WELL I WISH THEM LUCK!
HOPEFULLY I WILL BE RETURNING NEXT WEEK TO WORK. I AM STILL THINKING IF I WILL START ANY COURSES THIS YEAR. I WANTED TO GET A TEACHERS DEGREE. I HAD ALWAYS LIKED KIDS AND OF CUORSE THE HOURS ARE NOT THAT LONG AND THAT WAY WHEN ZULI IS OLDER AND CAN'T GO TO DAY CARE I WOULD BE ABLE TO STAY HOME WITH HER AFTER SCHOOL. IF NOT I WILL HAVE TO PLAN TO PERHAPS WORK LESS HOURS SO THAT I CAN CARE FOR HER.
WELL TAKE CARE AND WILL BE WRITING ONCE WE RETURN FROM OUR TRIP AND LET YOU ALL KNOW WHAT HAPPENED.
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Hospital Information: HOME
PO BOX 1696
INTERLACHEN, FL 32148
386 684-3824
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